{"ID":78060,"post_author":"9208550","post_date":"2018-12-14 14:21:58","post_date_gmt":"0000-00-00 00:00:00","post_content":"","post_title":"LIMSjournal - Spring 2016","post_excerpt":"","post_status":"draft","comment_status":"closed","ping_status":"closed","post_password":"","post_name":"","to_ping":"","pinged":"","post_modified":"2018-12-14 14:21:58","post_modified_gmt":"2018-12-14 19:21:58","post_content_filtered":"","post_parent":0,"guid":"https:\/\/www.limsforum.com\/?post_type=ebook&p=78060","menu_order":0,"post_type":"ebook","post_mime_type":"","comment_count":"0","filter":"","_ebook_metadata":{"enabled":"on","private":"0","guid":"51A6F9DA-80D0-4278-A308-D7D030912648","title":"LIMSjournal - Spring 2016","subtitle":"Volume 2, Issue 1","cover_theme":"nico_7","cover_image":"https:\/\/www.limsforum.com\/wp-content\/plugins\/rdp-ebook-builder\/pl\/cover.php?cover_style=nico_7&subtitle=Volume+2%2C+Issue+1&editor=Shawn+Douglas&title=LIMSjournal+-+Spring+2016&title_image=https%3A%2F%2Fs3.limsforum.com%2Fwww.limsforum.com%2Fwp-content%2Fuploads%2FFig4_Wenig_BMCBioinformatics2010_11.jpg&publisher=LabLynx+Press","editor":"Shawn Douglas","publisher":"LabLynx Press","author_id":"26","image_url":"","items":{"4eab7c6abfe5289f728109669eaa90ed_type":"article","4eab7c6abfe5289f728109669eaa90ed_title":"The need for informatics to support forensic pathology and death investigation (Levy 2015)","4eab7c6abfe5289f728109669eaa90ed_url":"https:\/\/www.limswiki.org\/index.php\/Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation","4eab7c6abfe5289f728109669eaa90ed_plaintext":"\n\n\t\t\n\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\n\t\t\t\tJournal:The need for informatics to support forensic pathology and death investigation\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\tFrom LIMSWiki\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\tJump to: navigation, search\n\n\t\t\t\t\t\n\t\t\t\t\tFull article title\n \nThe need for informatics to support forensic pathology and death investigationJournal\n \nJournal of Pathology InformaticsAuthor(s)\n \nLevy, BruceAuthor affiliation(s)\n \nUniversity of Illinois at ChicagoPrimary contact\n \nEmail: http:\/\/www.jpathinformatics.org (Requires login)Year published\n \n2015Volume and issue\n \n6Page(s)\n \n32DOI\n \n10.4103\/2153-3539.158907ISSN\n \n2045-2322Distribution license\n \nCreative Commons Attribution-NonCommercial-ShareAlike 3.0 UnportedWebsite\n \nhttp:\/\/www.jpathinformatics.orgDownload\n \nhttp:\/\/www.jpathinformatics.org\/temp\/JPatholInform6132-5990369_163823.pdf (PDF)\n\nContents\n\n1 Abstract \n2 Introduction \n3 What is clinical informatics? \n4 What is forensic pathology and medicine? \n5 Data collection in forensic pathology \n6 Effective use of forensic death investigation data \n\n6.1 Death certification \n6.2 Medical Examiners and Coroners Alert Project \n6.3 Medical Examiner and Coroner Information Sharing Program \n6.4 National Violent Death Reporting System \n6.5 National Missing and Unidentified Persons System \n\n\n7 Shortcomings of existing systems \n8 A path forward \n9 Conclusions \n10 Additional info \n11 References \n12 Notes \n\n\n\nAbstract \nAs a result of their practice of medicine, forensic pathologists create a wealth of data regarding the causes of and reasons for sudden, unexpected or violent deaths. This data have been effectively used to protect the health and safety of the general public in a variety of ways despite current and historical limitations. These limitations include the lack of data standards between the thousands of death investigation (DI) systems in the United States, rudimentary electronic information systems for DI, and the lack of effective communications and interfaces between these systems. Collaboration between forensic pathology and clinical informatics is required to address these shortcomings and a path forward has been proposed that will enable forensic pathology to maximize its effectiveness by providing timely and actionable information to public health and public safety agencies.\nKeywords: Clinical informatics, death investigation, forensic pathology, public health, public safety\n\nIntroduction \nClinical Informatics (CI) and Forensic Pathology would appear to be two subspecialties of medicine with little in common, as many equate informatics with the management of electronic medical records and forensics with the \"criminal\" investigation of homicides. These commonly held beliefs regarding forensics and informatics are simplistic and woefully incomplete. In reality, both fields are much broader, and there are opportunities for integration between forensics and informatics. Collaboration involving the expertise of the forensic pathologist in medicolegal death investigation (DI) and the skills of the clinical informatician to transform data into information can lead to the development of processes and systems that will better protect the health and safety of the public in an era of expanding threats from infectious disease, violent crime and terrorism.\n\nWhat is clinical informatics? \nClinical Informatics is a newly recognized subspecialty, with the first board examinations and certifications in 2013 and establishment of Accreditation Council for Graduate Medical Education accredited fellowships starting in 2014. CI is defined as \"the subspecialty of all medical specialties that transforms health care by analyzing, implementing, and evaluating information and communication systems to improve patient care, enhance access to care, advance individual and population health outcomes, and strengthen the clinician-patient relationship.\"[1] CI is commonly confused with Information Technology (IT), yet there is a distinct difference between these two fields. IT emphasizes the tools that are used for data manipulation while not being overly concerned with the data content. In contrast, CI's primary focus is on the data and considers IT as only one of many tools at its disposal.\nThere are two subdomains within the broad field of CI that are most relevant to forensics: Pathology informatics (PI) and Public health informatics.\nPathology Informatics is \"the study and management of information, information systems, and processes in Pathology.\"[2] This \"subspecialty\" of Pathology has grown to involve much more than the management of the huge volumes of data generated by anatomic pathology and the clinical laboratory. PI is involved with the entire testing process from the ordering of the test through presentation and interpretation of the results; in other words, the preanalytic, analytic and postanalytic phases of laboratory testing.[3]\nPublic health informatics is \"the systematic application of information, computer science and technology to public health practice, research, and learning.\"[4] Public health is focused on populations instead of individuals, prevention instead of treatment of disease, and government agencies instead of health care systems.[5] Public health systems work at local, state, national and global levels to both prevent morbidity and mortality utilizing multiple modalities and to address emergent situations such as infectious disease outbreaks when they occur.\n\nWhat is forensic pathology and medicine? \nForensic pathology is a subspecialty of pathology that concerns itself with the investigation of sudden, unexpected or violent deaths. While only formally recognized since the middle of the 20th Century, the origins of forensic pathology date back many centuries.[6] The major responsibility of the forensic pathologist is to determine the cause and manner of death for persons that fall under their jurisdiction. The forensic pathologist accomplishes this goal by correlating the data collected through conducting a death scene investigation, performing an autopsy, and ordering a variety of additional laboratory tests such as histology, toxicology, and microbiology. Forensic medicine is also involved with the examination and collection of evidence from living persons who are the victims of assault. The most common example of this in the United States is the examination of victims of sexual assault.[7]\nThere are two main DI systems in the United States, coroners and medical examiners. Both coroners and medical examiners are responsible for investigating sudden, unexpected or violent deaths and making rulings on the cause and manner of the death. Coroners represent an older system that was brought to the United States from England. Coroners are mostly elected officials with no specific training in DI or forensics. Medical examiners are an American system created about a century ago.[6] Medical examiners are all physicians (almost all have formal training in forensic pathology) and are appointed government officials.\n\nData collection in forensic pathology \nAs a result of their work, forensic health care professionals gather a large quantity of textual and image data about their patients. This data are not limited to histories, physical examination findings and laboratory results that parallel those collected in other fields of medicine, but also include data gathered at the scene of death and from law enforcement agencies investigating the death. This data are critical in assisting the forensic pathologist in determining the cause and manner of death. Frequently it is the investigative data from the scene instead of the physical findings of the autopsy that allows the forensic pathologist to distinguish an accident from a homicide or suicide.\nThis data have been historically collected in hard copy formats. While there has been progress toward collecting data in electronic formats in recent years, in 2011 approximately 18% of DI offices had no electronic case management system. Over half of the offices with electronic systems have idiosyncratic homegrown databases, many of them created in simple spreadsheet or database programs. Different data types (image, textual, laboratory results) are not often linked together by patient. For example, approximately 25% of both homegrown and vendor systems do not have direct access to scene and autopsy images.[8]\nThere are few interfaces between existing DI information systems and the information systems of law enforcement, supporting laboratories or public health. Toxicology laboratory results, which are critical in a large percentage of forensic deaths, are still submitted as paper requests and received as paper reports, instead of through a bidirectional interface between the laboratory and medical examiner information systems. Forensic pathologists manually enter cause of death data both into their own office's information system and their state's electronic death certificate. This represents both duplications of effort and a source for the increased incidence of transcription errors.\nSolving this issue would appear to be simple, but is complicated by a variety of political, logistical and financial challenges.\nThere are approximately 2,000 distinct DI systems in the United States. In 2004, only sixteen states had a centralized statewide medical examiner system. The other states had a combination of county coroner and\/or medical examiner systems. These county-based systems can represent large cities, medium suburban areas, or small rural communities. Over 80% of the DI systems are county coroner systems in small to medium-sized jurisdictions. Resources are heavily concentrated in a few large systems. Most offices serving jurisdictions of 25,000 persons or less have only one full-time equivalent and median annual operating budgets of under $20,000.[9]\nThis large number of DI systems of various sizes and with differing access to resources represents a challenge to consistent data collection. Larger DI offices with greater resources employ specially trained death investigators to systematically collect information regarding reported deaths, and are more likely to use electronic information systems to collect the information. Smaller offices typically rely on law enforcement, whose investigative focus is on the investigation of crime rather than death, and receive paper investigative reports that may or may not be scanned or integrated into an electronic system.\nThere are currently no standards regarding the structuring of data or interfaces for electronic DI databases. As a result, there is no effective way to transfer information between different agencies either in the same jurisdiction or between jurisdictions. This not only impedes efficient operations on a day-to-day basis, but also is crippling during multijurisdictional emergencies, such as mass fatality incidents or infectious disease epidemics, where the free flow of information is critical.\nDespite well-documented issues regarding the lack of data standards and inconsistencies between DI offices there has been little political will to invest the resources to address these deficiencies. The 2009 National Academy of Sciences Report on Forensic Science recommended that DI offices should have case information databases that would enable trend analysis of deaths for public health and safety purposes and continuous quality improvement.[10] Yet there has been a little improvement or significant political will to provide funding or standards for DI offices since that time.[11]\n\nEffective use of forensic death investigation data \nThere are numerous examples of how information generated as a result of the work of forensic pathologists has been utilized in meaningful ways.\n\nDeath certification \nThe collection and compilation of the cause of death statements from death certificates have long been used by public health for epidemiology studies, disease surveillance, and determining where to focus public health resources. Unfortunately, the causes of death on these certificates are incorrect as much as half of the time. This is true even for common causes of death such as cardiovascular disease and cancer. Common errors include incorrect causes of death, nonspecific causes of death, and the inclusion of irrelevant diseases as contributing to death.[12][13][14]\nForensic pathologists provide approximately 20% of the death certificates in the United States.[15] As they are specifically trained in the proper completion of death certificates, the accuracy of information provided is greatly increased as long as a full autopsy had been performed. However, due to limited financial and logistical resources in most DI offices, many natural deaths and a significant percentage of noncriminal violent deaths may not be autopsied. It has been well documented that forensic pathologists produce a significant number of errors in death certification when external examinations are performed instead of an autopsy.[16][17]\nDeath certificate information is not only used by local, state and national public health departments to help set public health initiatives, but is also used by other agencies reviewing deaths from specific causes. The United States Department of Transportation studies transportation-related deaths through their Fatality Analysis Reporting System, and this has resulted in many improvements in the designs of motor vehicles and roadways. Similarly, the United States Department of Labor's Census of Fatal Occupational Injuries and the National Institute for Occupational Safety and Health's Traumatic Occupational Injuries Research and Prevention Program have effectively used death certificate data to improve workplace safety.[18]\n\nMedical Examiners and Coroners Alert Project \nThe United States Consumer Product Safety Commission's (CPSC) Medical Examiners and Coroners Alert Project (MECAP) was created in 1976 as a quick alert system to report deaths where consumer products played a significant role in the death. Excluded from MECAP are deaths involving automobiles (but not off-road vehicles such as All-Terrain Vehicles), firearms (except air rifles and BB guns), foods, cosmetics, medical devices, aircraft, boats and boating equipment, and products used solely in industrial or commercial environments. There have been over 9,000 \"valuable cases\" reported that resulted in product recalls or product standards development. The CPSC's website provides detailed information regarding, which deaths should be reported. The program is voluntary and requires the medical examiner or coroner to proactively identify potential cases and take the time to report them. Reports can be accepted by phone, mail, fax or through a linked website.[19]\n\nMedical Examiner and Coroner Information Sharing Program \nThe Medical Examiner and Coroner Information Sharing Program (MECISP) was created by the Centers for Disease Control and Prevention in 1986. This was envisioned as a national system to collect and analyze information on medical examiner and coroner deaths to enable public health to quickly identify and understand the causes of sudden and unexpected deaths, leading to strategies to reduce mortality.[20] As the first decade of data collection contained data in the many different formats used by the offices voluntarily contributing to the program, MECISP set a goal of standardizing data collection by creating guidelines for creating forensic data management programs and a standardized DI data set.[21] Despite some success, the MECISP program was essentially defunded by the mid-2000's and is no longer functional.\n\nNational Violent Death Reporting System \nThe National Violent Death Reporting System (NVDRS) is another program created by the Centers for Disease Control and Prevention in 2002 to collect and study the causes of homicides and suicides. The premise is that all these deaths are potentially preventable and that comprehensive data collection will facilitate the creation of violence prevention strategies. NVDRS is a state-based system designed to combine data from multiple sources (death certificates, medical examiner and coroner reports, law enforcement reports, and crime laboratories) into a single searchable database. Initially deployed in 16 states, it is now collecting data from 32 states with the ultimate goal of covering the entire Unites States. In 2013 NVDRS went to a web-based system for easy accessibility to the data. The program has had many successes in studying deaths in children due to maltreatment, suicides among soldiers, intimate partner homicides, elderly suicides and geographic distributions of violence.[22][23][24][25]\n\nNational Missing and Unidentified Persons System \nThe issues of missing persons and unidentified human remains have been described as a silent mass disaster. At any given time, there are over 100,000 active missing persons cases and over 40,000 unidentified human remains in the United States. Historically there have been multiple databases at state and federal levels containing a combination of unique and overlapping information attempting to address the problem, but creating a logistical nightmare for law enforcement agencies and medical examiners to match missing persons with unidentified remains.[26]\nIn response, the United States Department of Justice created the National Missing and Unidentified Persons System (NamUs). NamUs has three main databases: a missing persons database in which families or law enforcement may enter information regarding missing persons and follow cases; an unidentified persons database where medical examiners and coroners may enter information on unidentified persons and the general public can search; and an unclaimed persons database for persons who have been identified but where family has not been found. The missing and unidentified person's databases interact to match information when entered into either system. As of October 2014, NamUs has resolved approximately 9000 cases of missing or unidentified persons.[27]\n\nShortcomings of existing systems \nWhile all of the above systems and programs have been effective, they have common shortcomings. With the exception of death certificates, the entry of information into these disparate databases is voluntary on the part of medical examiners and coroners. Much of the data entry is manual or semi-automated, requiring significant human effort to accomplish. These two factors complicated by the limited resources of many DI systems leads to partial participation, even when offices would prefer to contribute.\nDespite the recognition that there need to be standards regarding what data are collected and how it is classified and organized in a DI database, little progress has been made on this front. The few electronic communications of information directly from forensic offices to outside agencies are in the form of customized reports. There is currently no communication standard that would allow information to flow freely to, from and between DI electronic information systems, even when they are provided by the same vendor. These issues hinder the ability of forensic pathologists to effectively transform the data they are collecting into actionable information that would better inform public health and public safety agencies.\n\nA path forward \nA prerequisite for improving the current situation is recognition in the forensic pathology community of the value of their data beyond the individual case. The examples of the government-based data sharing programs described above support the opinion that it is unlikely the federal government will solve the overarching problem of data consistency and analysis in forensic pathology. DI organizations, such as the National Association of Medical Examiners (NAME) and the International Association of Coroners and Medical Examiners (IACME), need to take leadership of this issue. Both of these professional organizations are dedicated to advancing DI and have existing standards for accreditation of offices.[28][29] While these groups are experts in the area of DI, they lack the necessary informatics expertise that will ensure success.\nThe Association for Pathology Informatics (API), a professional organization of pathologists with expertise in informatics, is the obvious partner for this endeavor. API's focus on data standards in pathology and the informatics education of pathologists complements the focus on standards and education by NAME and IACME for forensic pathology and DI. API has a history of reaching out to collaborate with other professional organizations in pathology and CI, and already works with government and industry groups in the development of data and communication standards.[30]\nCollaboration between these groups could address the challenges of sharing, merging and analyzing data from the large number of DI systems, each with their unique methods of organizing their data. Rather than attempt to start with a comprehensive solution, it may be advantageous to choose a handful of smaller projects to demonstrate value and to work through any issues that might become apparent. Data fields that are more likely to be consistent across different DI offices, such as basic demographics, cause of death and manner of death, are an obvious first step in this process. Toxicology and other laboratory results may be another potential \"low hanging fruit\" for collection and analysis. With some early successes, it will be easier to sit down and develop a more comprehensive solution, which should also include standards for the next generation of DI information systems.\nThe key is to develop a process by which data can be automatically transferred through an electronic interface from the individual DI office systems into a single database and subsequently back out to other systems for analysis. This includes several challenges that need to be addressed. Data fields in different systems may have different names, data types and conventions for expressing the data. For example, a field for manner of death may not only be named differently in different systems, but might be expressed as free text fields, defined text fields, abbreviations or even a numerical or symbolic representation for each manner of death. While it may seem like an insurmountable problem, the development of data standards has been accomplished in other areas of health care and is attainable for forensic pathology.[31] A communication standard for transmitting the data would also need to be selected or developed. A communication standard ensures that the receiving system understands the message from the sending system and can place the communicated data into the proper fields. One commonly used an example for health care is Health Level 7. Another major issue to address is the security of the data, especially given the sensitive nature of this subset of personal health information.\nOnce this data are collected, policies regarding storage and access to the data for analysis and study will need to be created. There are currently many examples of secure data storage \"in the cloud\" that could be utilized. Some of this data can have great value if freely accessible on the web. NamUS is an excellent example of the power of open information. NVDRS has a mixture of data that is freely accessible or restricted based on whether the data may lead to disclosure of the identity of victims or suspects, and may serve as a guideline. Another issue to consider is the needs of law enforcement to restrict access to data for cases that are actively being investigated.\nIn addition to the expertise of forensic pathologists and pathology informaticians, this effort would require significant financial support, including; travel for forensic and informatics subject matter experts to design the project and define the standards, creation and support for the database, storage costs for the data, design of mechanisms to access or transfer the data for study, and general ongoing support for the project. Given the value of this data to many different government agencies and departments, it is reasonable to pursue funding through these agencies. It should be understood that the control over the collected data would reside with the professional organizations and not with the government itself since the subject matter experts are the best custodians of the data.\n\nConclusions \nForensic pathology contains a wealth of information that is invaluable for many purposes. The current spectrum of information systems available to medical examiners and coroners are woefully inadequate to support the efficient use of this data. Data standards for DI and forensic information systems need to be developed. Standard communication protocols would enable the efficient automatic transfer of this data directly from medical examiner and coroner offices to national programs such as NVDRS and NamUs, to other public health, public safety and homeland security surveillance systems, and increase the timeliness and usability of this information. Clinical\/PI needs to collaborate with forensic pathology to create systems to better utilize DI data to protect the public health and safety.\n\nAdditional info \nSource of Support: None\r\n\nConflict of Interest: None\n\nReferences \n\n\n\u2191 Accreditation Council for Graduate Medical Education (03 February 2014). \"ACGME Program Requirements for Graduate Medical Education in Clinical Informatics\" (PDF). http:\/\/www.acgme.org\/acgmeweb\/Portals\/0\/PFAssets\/ProgramRequirements\/381_clinical_informatics_02032014.pdf . Retrieved 30 December 2014 .   \n\n\u2191 Levy, B.P.; McClintock, D.S.; Lee, R.E. et al. (2012). \"Different tracks for pathology informatics fellowship training: Experiences of and input from trainees in a large multisite fellowship program\". Journal of Pathology Informatics 3: 30. doi:10.4103\/2153-3539.100362. PMC PMC3445299. 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PMID 16948511.   \n\n\u2191 Directorate for Epidemiology. \"Medical Examiners and Coroners Alert Project\" (PDF). MECAP News. U.S. Consumer Product Safety Commission. http:\/\/www.cpsc.gov\/\/Global\/Research-and-Statistics\/MECAP\/MECAP%20News%20-%20General%20Information.pdf . Retrieved 30 December 2014 .   \n\n\u2191 \"Medical examiner\/coroner information-sharing program\". The American Journal of Forensic Medicine and Pathology 10 (1): 88\u201389. 1989. PMID 2539009.   \n\n\u2191 Hanzlick, R. (1997). \"Centers for Disease Control and Prevention's Medical Examiner\/Coroner Information Sharing Program (MecISP)\". Journal of Forensic Sciences 42 (3): 531\u2013532. https:\/\/www.ncjrs.gov\/App\/Publications\/abstract.aspx?ID=172060 .   \n\n\u2191 \"National Violent Death Reporting System\". Centers for Disease Control and Prevention. 08 December 2014. http:\/\/www.cdc.gov\/violenceprevention\/nvdrs\/ . Retrieved 30 December 2014 .   \n\n\u2191 Klevens, J.; Leeb, R.T. (2010). \"Child maltreatment fatalities in children under 5: Findings from the National Violence Death Reporting System\". Child Abuse & Neglect 34 (4): 262\u2013266. doi:10.1016\/j.chiabu.2009.07.005. PMID 20304491.   \n\n\u2191 Smith, S.G.; Fowler, K.A.; Niolon, P.H. (2014). \"Intimate partner homicide and corollary victims in 16 states: National Violent Death Reporting System, 2003-2009\". American Journal of Public Health 104 (3): 461\u2013466. doi:10.2105\/AJPH.2013.301582. PMID 24432943.   \n\n\u2191 Parks, S.E.; Johnson, L.L.; McDaniel, D.D.; Gladden, M. (2014). \"Surveillance for Violent Deaths \u2014 National Violent Death Reporting System, 16 States, 2010\". Morbidity and Mortality Weekly Report: Surveillance Summaries 63 (SS01): 461\u2013466. http:\/\/www.cdc.gov\/mmwr\/preview\/mmwrhtml\/ss6301a1.htm .   \n\n\u2191 Ritter, N. (2007). \"Missing persons and unidentified remains: The nation\u2032s silent mass disaster\". National Institute of Justice Journal (256). http:\/\/www.nij.gov\/journals\/256\/pages\/missing-persons.aspx .   \n\n\u2191 Office of Justice Programs. \"National Missing and Unidentified Persons System\". United States Department of Justice. http:\/\/www.namus.gov\/index.htm . Retrieved 30 December 2014 .   \n\n\u2191 \"National Association of Medical Examiners Web Site\". National Association of Medical Examiners. http:\/\/www.thename.org\/ . Retrieved 01 April 2015 .   \n\n\u2191 \"International Association of Coroners and Medical Examiners - Home\". International Association of Coroners and Medical Examiners. http:\/\/www.theiacme.com\/ . Retrieved 01 April 2015 .   \n\n\u2191 \"Association for Pathology Informatics\". Association for Pathology Informatics. http:\/\/www.pathologyinformatics.org\/ . Retrieved 01 April 2015 .   \n\n\u2191 Hammond, W.E.; Jaffe, C.; Cimino, J.J.; Huff, S.M. (2014). \"Standards in biomedical informatics\". In Shortliffe, E.H.; Cimino, J.J.. Biomedical Informatics: Computer Applications in Health Care and Biomedicine. pp. 211\u2013253. doi:10.1007\/978-1-4471-4474-8. ISBN 9781447144731.   \n\n\nNotes \nThis presentation is faithful to the original, with only a few minor changes to presentation. In some cases important information was missing from the references, and that information was added.\n\n\n\n\n\n\nSource: <a rel=\"external_link\" class=\"external\" href=\"https:\/\/www.limswiki.org\/index.php\/Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\">https:\/\/www.limswiki.org\/index.php\/Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation<\/a>\n\t\t\t\t\tCategories: LIMSwiki journal articles (added in 2016)LIMSwiki journal articles (all)LIMSwiki journal articles on forensic science\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\n\t\t\t\n\t\t\n\t\t\n\t\t\tNavigation menu\n\t\t\t\t\t\n\t\t\tViews\n\n\t\t\t\n\t\t\t\t\n\t\t\t\tJournal\n\t\t\t\tDiscussion\n\t\t\t\tView source\n\t\t\t\tHistory\n\t\t\t\t\n\t\t\t\t\t\t\t\n\t\t\n\t\t\t\t\n\t\t\t\tPersonal tools\n\n\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\tLog in\n\t\t\t\t\t\t\t\t\t\t\t\t\tRequest account\n\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\n\t\t\t\n\t\t\t\n\t\t\t\t\n\t\t\t\n\t\t\t\t\n\t\tNavigation\n\t\t\n\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\tMain page\n\t\t\t\t\t\t\t\t\t\t\tRecent changes\n\t\t\t\t\t\t\t\t\t\t\tRandom page\n\t\t\t\t\t\t\t\t\t\t\tHelp\n\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\n\t\t\n\t\t\t\n\t\t\tSearch\n\n\t\t\t\n\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t \n\t\t\t\t\t\t\n\t\t\t\t\n\n\t\t\t\t\t\t\t\n\t\t\n\t\t\t\n\t\t\tTools\n\n\t\t\t\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\tWhat links here\n\t\t\t\t\t\t\t\t\t\t\tRelated changes\n\t\t\t\t\t\t\t\t\t\t\tSpecial pages\n\t\t\t\t\t\t\t\t\t\t\tPermanent link\n\t\t\t\t\t\t\t\t\t\t\tPage information\n\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\n\t\t\n\t\t\n\t\tPrint\/export\n\t\t\n\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\tCreate a book\n\t\t\t\t\t\t\t\t\t\t\tDownload as PDF\n\t\t\t\t\t\t\t\t\t\t\tDownload as Plain text\n\t\t\t\t\t\t\t\t\t\t\tPrintable version\n\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\n\t\t\n\t\t\n\t\tSponsors\n\t\t\n\t\t\t \r\n\n\t\r\n\n\t\r\n\n\t\r\n\n\t\n\t\r\n\n \r\n\n\t\n\t\r\n\n \r\n\n\t\n\t\r\n\n\t\n\t\r\n\n\t\r\n\n\t\r\n\n\t\r\n\t\t\n\t\t\n\t\t\t\n\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t This page was last modified on 28 March 2016, at 16:02.\n\t\t\t\t\t\t\t\t\tThis page has been accessed 1,847 times.\n\t\t\t\t\t\t\t\t\tContent is available under a Creative Commons Attribution-ShareAlike 4.0 International License unless otherwise noted.\n\t\t\t\t\t\t\t\t\tPrivacy policy\n\t\t\t\t\t\t\t\t\tAbout LIMSWiki\n\t\t\t\t\t\t\t\t\tDisclaimers\n\t\t\t\t\t\t\t\n\t\t\n\t\t\n\t\t\n\n","4eab7c6abfe5289f728109669eaa90ed_html":"<body class=\"mediawiki ltr sitedir-ltr ns-206 ns-subject page-Journal_The_need_for_informatics_to_support_forensic_pathology_and_death_investigation skin-monobook action-view\">\n<div id=\"rdp-ebb-globalWrapper\">\n\t\t<div id=\"rdp-ebb-column-content\">\n\t\t\t<div id=\"rdp-ebb-content\" class=\"mw-body\" role=\"main\">\n\t\t\t\t<a id=\"rdp-ebb-top\"><\/a>\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t<h1 id=\"rdp-ebb-firstHeading\" class=\"firstHeading\" lang=\"en\">Journal:The need for informatics to support forensic pathology and death investigation<\/h1>\n\t\t\t\t\n\t\t\t\t<div id=\"rdp-ebb-bodyContent\" class=\"mw-body-content\">\n\t\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\n\n\t\t\t\t\t<!-- start content -->\n\t\t\t\t\t<div id=\"rdp-ebb-mw-content-text\" lang=\"en\" dir=\"ltr\" class=\"mw-content-ltr\">\n\n\n<h2><span class=\"mw-headline\" id=\"Abstract\">Abstract<\/span><\/h2>\n<p>As a result of their practice of medicine, <a href=\"https:\/\/www.limswiki.org\/index.php\/Forensic_science\" title=\"Forensic science\" target=\"_blank\" class=\"wiki-link\" data-key=\"415d36a7b65494677b6d2873d5febec1\">forensic<\/a> pathologists create a wealth of data regarding the causes of and reasons for sudden, unexpected or violent deaths. This data have been effectively used to protect the health and safety of the general public in a variety of ways despite current and historical limitations. These limitations include the lack of data standards between the thousands of death investigation (DI) systems in the United States, rudimentary electronic information systems for DI, and the lack of effective communications and interfaces between these systems. Collaboration between forensic pathology and <a href=\"https:\/\/www.limswiki.org\/index.php\/Health_informatics\" title=\"Health informatics\" target=\"_blank\" class=\"wiki-link\" data-key=\"055eb51f53cfdbacc08ed150b266c9f4\">clinical informatics<\/a> is required to address these shortcomings and a path forward has been proposed that will enable forensic pathology to maximize its effectiveness by providing timely and actionable <a href=\"https:\/\/www.limswiki.org\/index.php\/Information\" title=\"Information\" target=\"_blank\" class=\"wiki-link\" data-key=\"6300a14d9c2776dcca0999b5ed940e7d\">information<\/a> to public health and public safety agencies.\n<\/p><p><b>Keywords:<\/b> Clinical informatics, death investigation, forensic pathology, public health, public safety\n<\/p>\n<h2><span class=\"mw-headline\" id=\"Introduction\">Introduction<\/span><\/h2>\n<p>Clinical Informatics (CI) and Forensic Pathology would appear to be two subspecialties of medicine with little in common, as many equate <a href=\"https:\/\/www.limswiki.org\/index.php\/Informatics\" title=\"Informatics\" class=\"mw-disambig wiki-link\" target=\"_blank\" data-key=\"ea0ff624ac3a644c35d2b51d39047bdf\">informatics<\/a> with the management of <a href=\"https:\/\/www.limswiki.org\/index.php\/Electronic_medical_record\" title=\"Electronic medical record\" target=\"_blank\" class=\"wiki-link\" data-key=\"99a695d2af23397807da0537d29d0be7\">electronic medical records<\/a> and <a href=\"https:\/\/www.limswiki.org\/index.php\/Forensic_science\" title=\"Forensic science\" target=\"_blank\" class=\"wiki-link\" data-key=\"415d36a7b65494677b6d2873d5febec1\">forensics<\/a> with the \"criminal\" investigation of homicides. These commonly held beliefs regarding forensics and informatics are simplistic and woefully incomplete. In reality, both fields are much broader, and there are opportunities for integration between forensics and informatics. Collaboration involving the expertise of the forensic pathologist in medicolegal death investigation (DI) and the skills of the clinical informatician to transform data into information can lead to the development of processes and systems that will better protect the health and safety of the public in an era of expanding threats from infectious disease, violent crime and terrorism.\n<\/p>\n<h2><span class=\"mw-headline\" id=\"What_is_clinical_informatics.3F\">What is clinical informatics?<\/span><\/h2>\n<p>Clinical Informatics is a newly recognized subspecialty, with the first board examinations and certifications in 2013 and establishment of Accreditation Council for Graduate Medical Education accredited fellowships starting in 2014. CI is defined as \"the subspecialty of all medical specialties that transforms health care by analyzing, implementing, and evaluating information and communication systems to improve patient care, enhance access to care, advance individual and population health outcomes, and strengthen the clinician-patient relationship.\"<sup id=\"rdp-ebb-cite_ref-ACGMEProg14_1-0\" class=\"reference\"><a href=\"#cite_note-ACGMEProg14-1\" rel=\"external_link\">[1]<\/a><\/sup> CI is commonly confused with Information Technology (IT), yet there is a distinct difference between these two fields. IT emphasizes the tools that are used for data manipulation while not being overly concerned with the data content. In contrast, CI's primary focus is on the data and considers IT as only one of many tools at its disposal.\n<\/p><p>There are two subdomains within the broad field of CI that are most relevant to forensics: Pathology informatics (PI) and <a href=\"https:\/\/www.limswiki.org\/index.php\/Public_health_informatics\" title=\"Public health informatics\" target=\"_blank\" class=\"wiki-link\" data-key=\"f0372a80f101e9f6fd00490dc1ebcedd\">Public health informatics<\/a>.\n<\/p><p>Pathology Informatics is \"the study and management of information, information systems, and processes in Pathology.\"<sup id=\"rdp-ebb-cite_ref-LevyDiff12_2-0\" class=\"reference\"><a href=\"#cite_note-LevyDiff12-2\" rel=\"external_link\">[2]<\/a><\/sup> This \"subspecialty\" of Pathology has grown to involve much more than the management of the huge volumes of data generated by <a href=\"https:\/\/www.limswiki.org\/index.php\/Anatomical_pathology\" title=\"Anatomical pathology\" target=\"_blank\" class=\"wiki-link\" data-key=\"5668db6faf37e8c1432a1d7953f30cb7\">anatomic pathology<\/a> and the <a href=\"https:\/\/www.limswiki.org\/index.php\/Clinical_laboratory\" title=\"Clinical laboratory\" target=\"_blank\" class=\"wiki-link\" data-key=\"307bcdf1bdbcd1bb167cee435b7a5463\">clinical laboratory<\/a>. PI is involved with the entire testing process from the ordering of the test through presentation and interpretation of the results; in other words, the preanalytic, analytic and postanalytic phases of <a href=\"https:\/\/www.limswiki.org\/index.php\/Laboratory\" title=\"Laboratory\" target=\"_blank\" class=\"wiki-link\" data-key=\"c57fc5aac9e4abf31dccae81df664c33\">laboratory<\/a> testing.<sup id=\"rdp-ebb-cite_ref-McClintockACore12_3-0\" class=\"reference\"><a href=\"#cite_note-McClintockACore12-3\" rel=\"external_link\">[3]<\/a><\/sup>\n<\/p><p>Public health informatics is \"the systematic application of information, computer science and technology to public health practice, research, and learning.\"<sup id=\"rdp-ebb-cite_ref-YasnoffPublic00_4-0\" class=\"reference\"><a href=\"#cite_note-YasnoffPublic00-4\" rel=\"external_link\">[4]<\/a><\/sup> Public health is focused on populations instead of individuals, prevention instead of treatment of disease, and government agencies instead of health care systems.<sup id=\"rdp-ebb-cite_ref-MagnusonPublic14_5-0\" class=\"reference\"><a href=\"#cite_note-MagnusonPublic14-5\" rel=\"external_link\">[5]<\/a><\/sup> Public health systems work at local, state, national and global levels to both prevent morbidity and mortality utilizing multiple modalities and to address emergent situations such as infectious disease outbreaks when they occur.\n<\/p>\n<h2><span class=\"mw-headline\" id=\"What_is_forensic_pathology_and_medicine.3F\">What is forensic pathology and medicine?<\/span><\/h2>\n<p>Forensic pathology is a subspecialty of pathology that concerns itself with the investigation of sudden, unexpected or violent deaths. While only formally recognized since the middle of the 20th Century, the origins of forensic pathology date back many centuries.<sup id=\"rdp-ebb-cite_ref-SpitzHist06_6-0\" class=\"reference\"><a href=\"#cite_note-SpitzHist06-6\" rel=\"external_link\">[6]<\/a><\/sup> The major responsibility of the forensic pathologist is to determine the cause and manner of death for persons that fall under their jurisdiction. The forensic pathologist accomplishes this goal by correlating the data collected through conducting a death scene investigation, performing an autopsy, and ordering a variety of additional laboratory tests such as histology, toxicology, and microbiology. Forensic medicine is also involved with the examination and collection of evidence from living persons who are the victims of assault. The most common example of this in the United States is the examination of victims of sexual assault.<sup id=\"rdp-ebb-cite_ref-DOJANat13_7-0\" class=\"reference\"><a href=\"#cite_note-DOJANat13-7\" rel=\"external_link\">[7]<\/a><\/sup>\n<\/p><p>There are two main DI systems in the United States, coroners and medical examiners. Both coroners and medical examiners are responsible for investigating sudden, unexpected or violent deaths and making rulings on the cause and manner of the death. Coroners represent an older system that was brought to the United States from England. Coroners are mostly elected officials with no specific training in DI or forensics. Medical examiners are an American system created about a century ago.<sup id=\"rdp-ebb-cite_ref-SpitzHist06_6-1\" class=\"reference\"><a href=\"#cite_note-SpitzHist06-6\" rel=\"external_link\">[6]<\/a><\/sup> Medical examiners are all physicians (almost all have formal training in forensic pathology) and are appointed government officials.\n<\/p>\n<h2><span class=\"mw-headline\" id=\"Data_collection_in_forensic_pathology\">Data collection in forensic pathology<\/span><\/h2>\n<p>As a result of their work, forensic health care professionals gather a large quantity of textual and image data about their patients. This data are not limited to histories, physical examination findings and laboratory results that parallel those collected in other fields of medicine, but also include data gathered at the scene of death and from law enforcement agencies investigating the death. This data are critical in assisting the forensic pathologist in determining the cause and manner of death. Frequently it is the investigative data from the scene instead of the physical findings of the autopsy that allows the forensic pathologist to distinguish an accident from a homicide or suicide.\n<\/p><p>This data have been historically collected in hard copy formats. While there has been progress toward collecting data in electronic formats in recent years, in 2011 approximately 18% of DI offices had no electronic case management system. Over half of the offices with electronic systems have idiosyncratic homegrown databases, many of them created in simple spreadsheet or database programs. Different data types (image, textual, laboratory results) are not often linked together by patient. For example, approximately 25% of both homegrown and vendor systems do not have direct access to scene and autopsy images.<sup id=\"rdp-ebb-cite_ref-LevyImp13_8-0\" class=\"reference\"><a href=\"#cite_note-LevyImp13-8\" rel=\"external_link\">[8]<\/a><\/sup>\n<\/p><p>There are few interfaces between existing DI information systems and the information systems of law enforcement, supporting laboratories or public health. Toxicology laboratory results, which are critical in a large percentage of forensic deaths, are still submitted as paper requests and received as paper reports, instead of through a bidirectional interface between the laboratory and medical examiner information systems. Forensic pathologists manually enter cause of death data both into their own office's information system and their state's electronic death certificate. This represents both duplications of effort and a source for the increased incidence of transcription errors.\n<\/p><p>Solving this issue would appear to be simple, but is complicated by a variety of political, logistical and financial challenges.\n<\/p><p>There are approximately 2,000 distinct DI systems in the United States. In 2004, only sixteen states had a centralized statewide medical examiner system. The other states had a combination of county coroner and\/or medical examiner systems. These county-based systems can represent large cities, medium suburban areas, or small rural communities. Over 80% of the DI systems are county coroner systems in small to medium-sized jurisdictions. Resources are heavily concentrated in a few large systems. Most offices serving jurisdictions of 25,000 persons or less have only one full-time equivalent and median annual operating budgets of under $20,000.<sup id=\"rdp-ebb-cite_ref-DOJMed07_9-0\" class=\"reference\"><a href=\"#cite_note-DOJMed07-9\" rel=\"external_link\">[9]<\/a><\/sup>\n<\/p><p>This large number of DI systems of various sizes and with differing access to resources represents a challenge to consistent data collection. Larger DI offices with greater resources employ specially trained death investigators to systematically collect information regarding reported deaths, and are more likely to use electronic information systems to collect the information. Smaller offices typically rely on law enforcement, whose investigative focus is on the investigation of crime rather than death, and receive paper investigative reports that may or may not be scanned or integrated into an electronic system.\n<\/p><p>There are currently no standards regarding the structuring of data or interfaces for electronic DI databases. As a result, there is no effective way to transfer information between different agencies either in the same jurisdiction or between jurisdictions. This not only impedes efficient operations on a day-to-day basis, but also is crippling during multijurisdictional emergencies, such as mass fatality incidents or infectious disease epidemics, where the free flow of information is critical.\n<\/p><p>Despite well-documented issues regarding the lack of data standards and inconsistencies between DI offices there has been little political will to invest the resources to address these deficiencies. The 2009 National Academy of Sciences Report on Forensic Science recommended that DI offices should have case information databases that would enable trend analysis of deaths for public health and safety purposes and continuous quality improvement.<sup id=\"rdp-ebb-cite_ref-CommitteeMed09_10-0\" class=\"reference\"><a href=\"#cite_note-CommitteeMed09-10\" rel=\"external_link\">[10]<\/a><\/sup> Yet there has been a little improvement or significant political will to provide funding or standards for DI offices since that time.<sup id=\"rdp-ebb-cite_ref-ThompsonTheReal11_11-0\" class=\"reference\"><a href=\"#cite_note-ThompsonTheReal11-11\" rel=\"external_link\">[11]<\/a><\/sup>\n<\/p>\n<h2><span class=\"mw-headline\" id=\"Effective_use_of_forensic_death_investigation_data\">Effective use of forensic death investigation data<\/span><\/h2>\n<p>There are numerous examples of how information generated as a result of the work of forensic pathologists has been utilized in meaningful ways.\n<\/p>\n<h3><span class=\"mw-headline\" id=\"Death_certification\">Death certification<\/span><\/h3>\n<p>The collection and compilation of the cause of death statements from death certificates have long been used by public health for epidemiology studies, disease surveillance, and determining where to focus public health resources. Unfortunately, the causes of death on these certificates are incorrect as much as half of the time. This is true even for common causes of death such as cardiovascular disease and cancer. Common errors include incorrect causes of death, nonspecific causes of death, and the inclusion of irrelevant diseases as contributing to death.<sup id=\"rdp-ebb-cite_ref-CambridgeTheAcc10_12-0\" class=\"reference\"><a href=\"#cite_note-CambridgeTheAcc10-12\" rel=\"external_link\">[12]<\/a><\/sup><sup id=\"rdp-ebb-cite_ref-SnyderRed14_13-0\" class=\"reference\"><a href=\"#cite_note-SnyderRed14-13\" rel=\"external_link\">[13]<\/a><\/sup><sup id=\"rdp-ebb-cite_ref-GermanTheAcc11_14-0\" class=\"reference\"><a href=\"#cite_note-GermanTheAcc11-14\" rel=\"external_link\">[14]<\/a><\/sup>\n<\/p><p>Forensic pathologists provide approximately 20% of the death certificates in the United States.<sup id=\"rdp-ebb-cite_ref-ParrishAss95_15-0\" class=\"reference\"><a href=\"#cite_note-ParrishAss95-15\" rel=\"external_link\">[15]<\/a><\/sup> As they are specifically trained in the proper completion of death certificates, the accuracy of information provided is greatly increased as long as a full autopsy had been performed. However, due to limited financial and logistical resources in most DI offices, many natural deaths and a significant percentage of noncriminal violent deaths may not be autopsied. It has been well documented that forensic pathologists produce a significant number of errors in death certification when external examinations are performed instead of an autopsy.<sup id=\"rdp-ebb-cite_ref-AsnaesUn80_16-0\" class=\"reference\"><a href=\"#cite_note-AsnaesUn80-16\" rel=\"external_link\">[16]<\/a><\/sup><sup id=\"rdp-ebb-cite_ref-NashelskyAcc03_17-0\" class=\"reference\"><a href=\"#cite_note-NashelskyAcc03-17\" rel=\"external_link\">[17]<\/a><\/sup>\n<\/p><p>Death certificate information is not only used by local, state and national public health departments to help set public health initiatives, but is also used by other agencies reviewing deaths from specific causes. The United States Department of Transportation studies transportation-related deaths through their Fatality Analysis Reporting System, and this has resulted in many improvements in the designs of motor vehicles and roadways. Similarly, the United States Department of Labor's Census of Fatal Occupational Injuries and the National Institute for Occupational Safety and Health's Traumatic Occupational Injuries Research and Prevention Program have effectively used death certificate data to improve workplace safety.<sup id=\"rdp-ebb-cite_ref-HanzlickMed06_18-0\" class=\"reference\"><a href=\"#cite_note-HanzlickMed06-18\" rel=\"external_link\">[18]<\/a><\/sup>\n<\/p>\n<h3><span class=\"mw-headline\" id=\"Medical_Examiners_and_Coroners_Alert_Project\">Medical Examiners and Coroners Alert Project<\/span><\/h3>\n<p>The United States Consumer Product Safety Commission's (CPSC) Medical Examiners and Coroners Alert Project (MECAP) was created in 1976 as a quick alert system to report deaths where consumer products played a significant role in the death. Excluded from MECAP are deaths involving automobiles (but not off-road vehicles such as All-Terrain Vehicles), firearms (except air rifles and BB guns), foods, cosmetics, medical devices, aircraft, boats and boating equipment, and products used solely in industrial or commercial environments. There have been over 9,000 \"valuable cases\" reported that resulted in product recalls or product standards development. The CPSC's website provides detailed information regarding, which deaths should be reported. The program is voluntary and requires the medical examiner or coroner to proactively identify potential cases and take the time to report them. Reports can be accepted by phone, mail, fax or through a linked website.<sup id=\"rdp-ebb-cite_ref-DirectorateMed_19-0\" class=\"reference\"><a href=\"#cite_note-DirectorateMed-19\" rel=\"external_link\">[19]<\/a><\/sup>\n<\/p>\n<h3><span class=\"mw-headline\" id=\"Medical_Examiner_and_Coroner_Information_Sharing_Program\">Medical Examiner and Coroner Information Sharing Program<\/span><\/h3>\n<p>The Medical Examiner and Coroner Information Sharing Program (MECISP) was created by the Centers for Disease Control and Prevention in 1986. This was envisioned as a national system to collect and analyze information on medical examiner and coroner deaths to enable public health to quickly identify and understand the causes of sudden and unexpected deaths, leading to strategies to reduce mortality.<sup id=\"rdp-ebb-cite_ref-Medical89_20-0\" class=\"reference\"><a href=\"#cite_note-Medical89-20\" rel=\"external_link\">[20]<\/a><\/sup> As the first decade of data collection contained data in the many different formats used by the offices voluntarily contributing to the program, MECISP set a goal of standardizing data collection by creating guidelines for creating forensic data management programs and a standardized DI data set.<sup id=\"rdp-ebb-cite_ref-HanzlickCenters97_21-0\" class=\"reference\"><a href=\"#cite_note-HanzlickCenters97-21\" rel=\"external_link\">[21]<\/a><\/sup> Despite some success, the MECISP program was essentially defunded by the mid-2000's and is no longer functional.\n<\/p>\n<h3><span class=\"mw-headline\" id=\"National_Violent_Death_Reporting_System\">National Violent Death Reporting System<\/span><\/h3>\n<p>The National Violent Death Reporting System (NVDRS) is another program created by the Centers for Disease Control and Prevention in 2002 to collect and study the causes of homicides and suicides. The premise is that all these deaths are potentially preventable and that comprehensive data collection will facilitate the creation of violence prevention strategies. NVDRS is a state-based system designed to combine data from multiple sources (death certificates, medical examiner and coroner reports, law enforcement reports, and crime laboratories) into a single searchable database. Initially deployed in 16 states, it is now collecting data from 32 states with the ultimate goal of covering the entire Unites States. In 2013 NVDRS went to a web-based system for easy accessibility to the data. The program has had many successes in studying deaths in children due to maltreatment, suicides among soldiers, intimate partner homicides, elderly suicides and geographic distributions of violence.<sup id=\"rdp-ebb-cite_ref-CDCInj14_22-0\" class=\"reference\"><a href=\"#cite_note-CDCInj14-22\" rel=\"external_link\">[22]<\/a><\/sup><sup id=\"rdp-ebb-cite_ref-KlevensChild10_23-0\" class=\"reference\"><a href=\"#cite_note-KlevensChild10-23\" rel=\"external_link\">[23]<\/a><\/sup><sup id=\"rdp-ebb-cite_ref-SmithInt14_24-0\" class=\"reference\"><a href=\"#cite_note-SmithInt14-24\" rel=\"external_link\">[24]<\/a><\/sup><sup id=\"rdp-ebb-cite_ref-ParksSurv14_25-0\" class=\"reference\"><a href=\"#cite_note-ParksSurv14-25\" rel=\"external_link\">[25]<\/a><\/sup>\n<\/p>\n<h3><span class=\"mw-headline\" id=\"National_Missing_and_Unidentified_Persons_System\">National Missing and Unidentified Persons System<\/span><\/h3>\n<p>The issues of missing persons and unidentified human remains have been described as a silent mass disaster. At any given time, there are over 100,000 active missing persons cases and over 40,000 unidentified human remains in the United States. Historically there have been multiple databases at state and federal levels containing a combination of unique and overlapping information attempting to address the problem, but creating a logistical nightmare for law enforcement agencies and medical examiners to match missing persons with unidentified remains.<sup id=\"rdp-ebb-cite_ref-RitterMiss07_26-0\" class=\"reference\"><a href=\"#cite_note-RitterMiss07-26\" rel=\"external_link\">[26]<\/a><\/sup>\n<\/p><p>In response, the United States Department of Justice created the National Missing and Unidentified Persons System (NamUs). NamUs has three main databases: a missing persons database in which families or law enforcement may enter information regarding missing persons and follow cases; an unidentified persons database where medical examiners and coroners may enter information on unidentified persons and the general public can search; and an unclaimed persons database for persons who have been identified but where family has not been found. The missing and unidentified person's databases interact to match information when entered into either system. As of October 2014, NamUs has resolved approximately 9000 cases of missing or unidentified persons.<sup id=\"rdp-ebb-cite_ref-NamUsHome_27-0\" class=\"reference\"><a href=\"#cite_note-NamUsHome-27\" rel=\"external_link\">[27]<\/a><\/sup>\n<\/p>\n<h2><span class=\"mw-headline\" id=\"Shortcomings_of_existing_systems\">Shortcomings of existing systems<\/span><\/h2>\n<p>While all of the above systems and programs have been effective, they have common shortcomings. With the exception of death certificates, the entry of information into these disparate databases is voluntary on the part of medical examiners and coroners. Much of the data entry is manual or semi-automated, requiring significant human effort to accomplish. These two factors complicated by the limited resources of many DI systems leads to partial participation, even when offices would prefer to contribute.\n<\/p><p>Despite the recognition that there need to be standards regarding what data are collected and how it is classified and organized in a DI database, little progress has been made on this front. The few electronic communications of information directly from forensic offices to outside agencies are in the form of customized reports. There is currently no communication standard that would allow information to flow freely to, from and between DI electronic information systems, even when they are provided by the same vendor. These issues hinder the ability of forensic pathologists to effectively transform the data they are collecting into actionable information that would better inform public health and public safety agencies.\n<\/p>\n<h2><span class=\"mw-headline\" id=\"A_path_forward\">A path forward<\/span><\/h2>\n<p>A prerequisite for improving the current situation is recognition in the forensic pathology community of the value of their data beyond the individual case. The examples of the government-based data sharing programs described above support the opinion that it is unlikely the federal government will solve the overarching problem of data consistency and analysis in forensic pathology. DI organizations, such as the National Association of Medical Examiners (NAME) and the International Association of Coroners and Medical Examiners (IACME), need to take leadership of this issue. Both of these professional organizations are dedicated to advancing DI and have existing standards for accreditation of offices.<sup id=\"rdp-ebb-cite_ref-NAMEHome_28-0\" class=\"reference\"><a href=\"#cite_note-NAMEHome-28\" rel=\"external_link\">[28]<\/a><\/sup><sup id=\"rdp-ebb-cite_ref-IACMEHome_29-0\" class=\"reference\"><a href=\"#cite_note-IACMEHome-29\" rel=\"external_link\">[29]<\/a><\/sup> While these groups are experts in the area of DI, they lack the necessary informatics expertise that will ensure success.\n<\/p><p>The Association for Pathology Informatics (API), a professional organization of pathologists with expertise in informatics, is the obvious partner for this endeavor. API's focus on data standards in pathology and the informatics education of pathologists complements the focus on standards and education by NAME and IACME for forensic pathology and DI. API has a history of reaching out to collaborate with other professional organizations in pathology and CI, and already works with government and industry groups in the development of data and communication standards.<sup id=\"rdp-ebb-cite_ref-APIHome_30-0\" class=\"reference\"><a href=\"#cite_note-APIHome-30\" rel=\"external_link\">[30]<\/a><\/sup>\n<\/p><p>Collaboration between these groups could address the challenges of sharing, merging and analyzing data from the large number of DI systems, each with their unique methods of organizing their data. Rather than attempt to start with a comprehensive solution, it may be advantageous to choose a handful of smaller projects to demonstrate value and to work through any issues that might become apparent. Data fields that are more likely to be consistent across different DI offices, such as basic demographics, cause of death and manner of death, are an obvious first step in this process. Toxicology and other laboratory results may be another potential \"low hanging fruit\" for collection and analysis. With some early successes, it will be easier to sit down and develop a more comprehensive solution, which should also include standards for the next generation of DI information systems.\n<\/p><p>The key is to develop a process by which data can be automatically transferred through an electronic interface from the individual DI office systems into a single database and subsequently back out to other systems for analysis. This includes several challenges that need to be addressed. Data fields in different systems may have different names, data types and conventions for expressing the data. For example, a field for manner of death may not only be named differently in different systems, but might be expressed as free text fields, defined text fields, abbreviations or even a numerical or symbolic representation for each manner of death. While it may seem like an insurmountable problem, the development of data standards has been accomplished in other areas of health care and is attainable for forensic pathology.<sup id=\"rdp-ebb-cite_ref-ShortliffeBio14_31-0\" class=\"reference\"><a href=\"#cite_note-ShortliffeBio14-31\" rel=\"external_link\">[31]<\/a><\/sup> A communication standard for transmitting the data would also need to be selected or developed. A communication standard ensures that the receiving system understands the message from the sending system and can place the communicated data into the proper fields. One commonly used an example for health care is Health Level 7. Another major issue to address is the security of the data, especially given the sensitive nature of this subset of personal health information.\n<\/p><p>Once this data are collected, policies regarding storage and access to the data for analysis and study will need to be created. There are currently many examples of secure data storage \"in the cloud\" that could be utilized. Some of this data can have great value if freely accessible on the web. NamUS is an excellent example of the power of open information. NVDRS has a mixture of data that is freely accessible or restricted based on whether the data may lead to disclosure of the identity of victims or suspects, and may serve as a guideline. Another issue to consider is the needs of law enforcement to restrict access to data for cases that are actively being investigated.\n<\/p><p>In addition to the expertise of forensic pathologists and pathology informaticians, this effort would require significant financial support, including; travel for forensic and informatics subject matter experts to design the project and define the standards, creation and support for the database, storage costs for the data, design of mechanisms to access or transfer the data for study, and general ongoing support for the project. Given the value of this data to many different government agencies and departments, it is reasonable to pursue funding through these agencies. It should be understood that the control over the collected data would reside with the professional organizations and not with the government itself since the subject matter experts are the best custodians of the data.\n<\/p>\n<h2><span class=\"mw-headline\" id=\"Conclusions\">Conclusions<\/span><\/h2>\n<p>Forensic pathology contains a wealth of information that is invaluable for many purposes. The current spectrum of information systems available to medical examiners and coroners are woefully inadequate to support the efficient use of this data. Data standards for DI and forensic information systems need to be developed. Standard communication protocols would enable the efficient automatic transfer of this data directly from medical examiner and coroner offices to national programs such as NVDRS and NamUs, to other public health, public safety and homeland security surveillance systems, and increase the timeliness and usability of this information. Clinical\/PI needs to collaborate with forensic pathology to create systems to better utilize DI data to protect the public health and safety.\n<\/p>\n<h2><span class=\"mw-headline\" id=\"Additional_info\">Additional info<\/span><\/h2>\n<p>Source of Support: None<br \/>\nConflict of Interest: None\n<\/p>\n<h2><span class=\"mw-headline\" id=\"References\">References<\/span><\/h2>\n<div class=\"reflist references-column-width\" style=\"-moz-column-width: 30em; -webkit-column-width: 30em; column-width: 30em; list-style-type: decimal;\">\n<ol class=\"references\">\n<li id=\"cite_note-ACGMEProg14-1\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-ACGMEProg14_1-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation web\">Accreditation Council for Graduate Medical Education (03 February 2014). <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.acgme.org\/acgmeweb\/Portals\/0\/PFAssets\/ProgramRequirements\/381_clinical_informatics_02032014.pdf\" target=\"_blank\">\"ACGME Program Requirements for Graduate Medical Education in Clinical Informatics\"<\/a> (PDF)<span class=\"printonly\">. <a rel=\"external_link\" class=\"external free\" href=\"http:\/\/www.acgme.org\/acgmeweb\/Portals\/0\/PFAssets\/ProgramRequirements\/381_clinical_informatics_02032014.pdf\" target=\"_blank\">http:\/\/www.acgme.org\/acgmeweb\/Portals\/0\/PFAssets\/ProgramRequirements\/381_clinical_informatics_02032014.pdf<\/a><\/span><span class=\"reference-accessdate\">. 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(2012). <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.pubmedcentral.nih.gov\/articlerender.fcgi?tool=pmcentrez&artid=PMC3445301\" target=\"_blank\">\"A core curriculum for clinical fellowship training in pathology informatics\"<\/a>. <i>Journal of Pathology Informatics<\/i> <b>3<\/b>: 31. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/Digital_object_identifier\" target=\"_blank\">doi<\/a>:<a rel=\"external_link\" class=\"external text\" href=\"http:\/\/dx.doi.org\/10.4103%2F2153-3539.100364\" target=\"_blank\">10.4103\/2153-3539.100364<\/a>. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/PubMed_Central\" target=\"_blank\">PMC<\/a> <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC3445301\/\" target=\"_blank\">PMC3445301<\/a>. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/PubMed_Identifier\" target=\"_blank\">PMID<\/a> <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.ncbi.nlm.nih.gov\/pubmed\/23024890\" target=\"_blank\">23024890<\/a><span class=\"printonly\">. <a rel=\"external_link\" class=\"external free\" href=\"http:\/\/www.pubmedcentral.nih.gov\/articlerender.fcgi?tool=pmcentrez&artid=PMC3445301\" target=\"_blank\">http:\/\/www.pubmedcentral.nih.gov\/articlerender.fcgi?tool=pmcentrez&artid=PMC3445301<\/a><\/span>.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.genre=article&rft.atitle=A+core+curriculum+for+clinical+fellowship+training+in+pathology+informatics&rft.jtitle=Journal+of+Pathology+Informatics&rft.aulast=McClintock%2C+D.S.%3B+Levy%2C+B.P.%3B+Lane%2C+W.J.+et+al.&rft.au=McClintock%2C+D.S.%3B+Levy%2C+B.P.%3B+Lane%2C+W.J.+et+al.&rft.date=2012&rft.volume=3&rft.pages=31&rft_id=info:doi\/10.4103%2F2153-3539.100364&rft_id=info:pmc\/PMC3445301&rft_id=info:pmid\/23024890&rft_id=http%3A%2F%2Fwww.pubmedcentral.nih.gov%2Farticlerender.fcgi%3Ftool%3Dpmcentrez%26artid%3DPMC3445301&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<li id=\"cite_note-YasnoffPublic00-4\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-YasnoffPublic00_4-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation Journal\">Yasnoff, W.A.; O\u2032Carroll, P.W.; Koo, D.; Linkins, R.W.; Kilbourne, E.M. (2000). <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/journals.lww.com\/jphmp\/Fulltext\/2000\/06060\/Public_Health_Informatics__Improving_and.10.aspx\" target=\"_blank\">\"Public health informatics: Improving and transforming public health in the information age\"<\/a>. <i>Journal of Public Health Management and Practice<\/i> <b>6<\/b> (6): 67\u201375<span class=\"printonly\">. <a rel=\"external_link\" class=\"external free\" href=\"http:\/\/journals.lww.com\/jphmp\/Fulltext\/2000\/06060\/Public_Health_Informatics__Improving_and.10.aspx\" target=\"_blank\">http:\/\/journals.lww.com\/jphmp\/Fulltext\/2000\/06060\/Public_Health_Informatics__Improving_and.10.aspx<\/a><\/span>.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.genre=article&rft.atitle=Public+health+informatics%3A+Improving+and+transforming+public+health+in+the+information+age&rft.jtitle=Journal+of+Public+Health+Management+and+Practice&rft.aulast=Yasnoff%2C+W.A.%3B+O%E2%80%B2Carroll%2C+P.W.%3B+Koo%2C+D.%3B+Linkins%2C+R.W.%3B+Kilbourne%2C+E.M.&rft.au=Yasnoff%2C+W.A.%3B+O%E2%80%B2Carroll%2C+P.W.%3B+Koo%2C+D.%3B+Linkins%2C+R.W.%3B+Kilbourne%2C+E.M.&rft.date=2000&rft.volume=6&rft.issue=6&rft.pages=67%E2%80%9375&rft_id=http%3A%2F%2Fjournals.lww.com%2Fjphmp%2FFulltext%2F2000%2F06060%2FPublic_Health_Informatics__Improving_and.10.aspx&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<li id=\"cite_note-MagnusonPublic14-5\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-MagnusonPublic14_5-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation book\">Magnuson, J.A.; O\u2019Carroll, P.W. (2014). \"Introduction to public health informatics\". In Magnuson, J.A.; Fu Jr., P.C.. <i>Public Health Informatics and Information Systems<\/i>. pp. 3-18. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/Digital_object_identifier\" target=\"_blank\">doi<\/a>:<a rel=\"external_link\" class=\"external text\" href=\"http:\/\/dx.doi.org\/10.1007%2F978-1-4471-4237-9_1\" target=\"_blank\">10.1007\/978-1-4471-4237-9_1<\/a>. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/International_Standard_Book_Number\" target=\"_blank\">ISBN<\/a> 9781447142379.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Abook&rft.genre=bookitem&rft.btitle=Introduction+to+public+health+informatics&rft.atitle=Public+Health+Informatics+and+Information+Systems&rft.aulast=Magnuson%2C+J.A.%3B+O%E2%80%99Carroll%2C+P.W.&rft.au=Magnuson%2C+J.A.%3B+O%E2%80%99Carroll%2C+P.W.&rft.date=2014&rft.pages=pp.%26nbsp%3B3-18&rft_id=info:doi\/10.1007%2F978-1-4471-4237-9_1&rft.isbn=9781447142379&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<li id=\"cite_note-SpitzHist06-6\"><span class=\"mw-cite-backlink\">\u2191 <sup><a href=\"#cite_ref-SpitzHist06_6-0\" rel=\"external_link\">6.0<\/a><\/sup> <sup><a href=\"#cite_ref-SpitzHist06_6-1\" rel=\"external_link\">6.1<\/a><\/sup><\/span> <span class=\"reference-text\"><span class=\"citation book\">Spitz, D.J. 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In Spitz, W.U.; Spitz, D.J.. <i>Spitz and Fisher's Medicolegal Investigation of Death: Guidelines for the Application of Pathology to Crime Investigation<\/i>. pp. 3-21. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/International_Standard_Book_Number\" target=\"_blank\">ISBN<\/a> 9780398075446<span class=\"printonly\">. <a rel=\"external_link\" class=\"external free\" href=\"https:\/\/books.google.com\/books?id=-m_fb580Vx0C\" target=\"_blank\">https:\/\/books.google.com\/books?id=-m_fb580Vx0C<\/a><\/span>.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Abook&rft.genre=bookitem&rft.btitle=History+and+development+of+forensic+medicine+and+pathology&rft.atitle=Spitz+and+Fisher%27s+Medicolegal+Investigation+of+Death%3A+Guidelines+for+the+Application+of+Pathology+to+Crime+Investigation&rft.aulast=Spitz%2C+D.J.&rft.au=Spitz%2C+D.J.&rft.date=2006&rft.pages=pp.%26nbsp%3B3-21&rft.isbn=9780398075446&rft_id=https%3A%2F%2Fbooks.google.com%2Fbooks%3Fid%3D-m_fb580Vx0C&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<li id=\"cite_note-DOJANat13-7\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-DOJANat13_7-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation web\">U.S. Department of Justice Office on Violence Against Women (April 2013). <a rel=\"external_link\" class=\"external text\" href=\"https:\/\/www.ncjrs.gov\/pdffiles1\/ovw\/241903.pdf\" target=\"_blank\">\"A National Protocol for Sexual Assault Medical Forensic Examinations\"<\/a> (PDF). U.S. Department of Justice<span class=\"printonly\">. <a rel=\"external_link\" class=\"external free\" href=\"https:\/\/www.ncjrs.gov\/pdffiles1\/ovw\/241903.pdf\" target=\"_blank\">https:\/\/www.ncjrs.gov\/pdffiles1\/ovw\/241903.pdf<\/a><\/span><span class=\"reference-accessdate\">. Retrieved 30 December 2014<\/span>.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Abook&rft.genre=bookitem&rft.btitle=A+National+Protocol+for+Sexual+Assault+Medical+Forensic+Examinations&rft.atitle=&rft.aulast=U.S.+Department+of+Justice+Office+on+Violence+Against+Women&rft.au=U.S.+Department+of+Justice+Office+on+Violence+Against+Women&rft.date=April+2013&rft.pub=U.S.+Department+of+Justice&rft_id=https%3A%2F%2Fwww.ncjrs.gov%2Fpdffiles1%2Fovw%2F241903.pdf&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<li id=\"cite_note-LevyImp13-8\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-LevyImp13_8-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation Journal\">Levy, B.P. (2013). \"Implementation and user satisfaction with forensic laboratory information systems in death investigation offices\". <i>The American Journal of Forensic Medicine and Pathology<\/i> <b>34<\/b> (1): 63\u201367. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/Digital_object_identifier\" target=\"_blank\">doi<\/a>:<a rel=\"external_link\" class=\"external text\" href=\"http:\/\/dx.doi.org\/10.1097%2FPAF.0b013e31827ab5c6\" target=\"_blank\">10.1097\/PAF.0b013e31827ab5c6<\/a>. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/PubMed_Identifier\" target=\"_blank\">PMID<\/a> <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.ncbi.nlm.nih.gov\/pubmed\/23361076\" target=\"_blank\">23361076<\/a>.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.genre=article&rft.atitle=Implementation+and+user+satisfaction+with+forensic+laboratory+information+systems+in+death+investigation+offices&rft.jtitle=The+American+Journal+of+Forensic+Medicine+and+Pathology&rft.aulast=Levy%2C+B.P.&rft.au=Levy%2C+B.P.&rft.date=2013&rft.volume=34&rft.issue=1&rft.pages=63%E2%80%9367&rft_id=info:doi\/10.1097%2FPAF.0b013e31827ab5c6&rft_id=info:pmid\/23361076&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<li id=\"cite_note-DOJMed07-9\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-DOJMed07_9-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation web\">U.S. Department of Justice Office of Justice Programs (June 2007). <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.bjs.gov\/content\/pub\/pdf\/meco04.pdf\" target=\"_blank\">\"Medical Examiners and Coroners' Offices, 2004\"<\/a> (PDF). U.S. Department of Justice<span class=\"printonly\">. <a rel=\"external_link\" class=\"external free\" href=\"http:\/\/www.bjs.gov\/content\/pub\/pdf\/meco04.pdf\" target=\"_blank\">http:\/\/www.bjs.gov\/content\/pub\/pdf\/meco04.pdf<\/a><\/span><span class=\"reference-accessdate\">. Retrieved 30 December 2014<\/span>.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Abook&rft.genre=bookitem&rft.btitle=Medical+Examiners+and+Coroners%27+Offices%2C+2004&rft.atitle=&rft.aulast=U.S.+Department+of+Justice+Office+of+Justice+Programs&rft.au=U.S.+Department+of+Justice+Office+of+Justice+Programs&rft.date=June+2007&rft.pub=U.S.+Department+of+Justice&rft_id=http%3A%2F%2Fwww.bjs.gov%2Fcontent%2Fpub%2Fpdf%2Fmeco04.pdf&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<li id=\"cite_note-CommitteeMed09-10\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-CommitteeMed09_10-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation book\">Committee on Identifying the Needs of the Forensic Sciences Community (2009). \"Medical examiner and coroner systems: Current and future needs\". In National Research Council of the National Academies. <i>Strengthening Forensic Science in the United States: <\/i>\nA Path Forward<i>. pp. 241\u2013268. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/Digital_object_identifier\" target=\"_blank\">doi<\/a>:<a rel=\"external_link\" class=\"external text\" href=\"http:\/\/dx.doi.org\/10.17226%2F12589\" target=\"_blank\">10.17226\/12589<\/a>. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/International_Standard_Book_Number\" target=\"_blank\">ISBN<\/a> 9780309131308.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Abook&rft.genre=bookitem&rft.btitle=Medical+examiner+and+coroner+systems%3A+Current+and+future+needs&rft.atitle=Strengthening+Forensic+Science+in+the+United+States%3A+%0AA+Path+Forward&rft.aulast=Committee+on+Identifying+the+Needs+of+the+Forensic+Sciences+Community&rft.au=Committee+on+Identifying+the+Needs+of+the+Forensic+Sciences+Community&rft.date=2009&rft.pages=pp.%26nbsp%3B241%E2%80%93268&rft_id=info:doi\/10.17226%2F12589&rft.isbn=9780309131308&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span><\/i>\n<\/li>\n<li id=\"cite_note-ThompsonTheReal11-11\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-ThompsonTheReal11_11-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation web\">Thompson, A.C.; Secret, M.; Bergman, L.; Bartlett S. (31 January 2011). <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.propublica.org\/article\/the-real-csi-americas-patchwork-system-of-death-investigation\" target=\"_blank\">\"The Real \u2018CSI\u2019: How America\u2019s Patchwork System of Death Investigations Puts the Living at Risk\"<\/a>. <i>Pro Publica<\/i>. Pro Publica, Inc<span class=\"printonly\">. <a rel=\"external_link\" class=\"external free\" href=\"http:\/\/www.propublica.org\/article\/the-real-csi-americas-patchwork-system-of-death-investigation\" target=\"_blank\">http:\/\/www.propublica.org\/article\/the-real-csi-americas-patchwork-system-of-death-investigation<\/a><\/span><span class=\"reference-accessdate\">. Retrieved 30 December 2014<\/span>.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Abook&rft.genre=bookitem&rft.btitle=The+Real+%E2%80%98CSI%E2%80%99%3A+How+America%E2%80%99s+Patchwork+System+of+Death+Investigations+Puts+the+Living+at+Risk&rft.atitle=Pro+Publica&rft.aulast=Thompson%2C+A.C.%3B+Secret%2C+M.%3B+Bergman%2C+L.%3B+Bartlett+S.&rft.au=Thompson%2C+A.C.%3B+Secret%2C+M.%3B+Bergman%2C+L.%3B+Bartlett+S.&rft.date=31+January+2011&rft.pub=Pro+Publica%2C+Inc&rft_id=http%3A%2F%2Fwww.propublica.org%2Farticle%2Fthe-real-csi-americas-patchwork-system-of-death-investigation&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<li id=\"cite_note-CambridgeTheAcc10-12\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-CambridgeTheAcc10_12-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation Journal\">Cambridge, B.; Cina, S.J. (2010). \"The accuracy of death certificate completion in a suburban community\". <i>The American Journal of Forensic Medicine and Pathology<\/i> <b>31<\/b> (3): 232\u2013235. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/Digital_object_identifier\" target=\"_blank\">doi<\/a>:<a rel=\"external_link\" class=\"external text\" href=\"http:\/\/dx.doi.org\/10.1097%2FPAF.0b013e3181e5e0e2\" target=\"_blank\">10.1097\/PAF.0b013e3181e5e0e2<\/a>. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/PubMed_Identifier\" target=\"_blank\">PMID<\/a> <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.ncbi.nlm.nih.gov\/pubmed\/20512028\" target=\"_blank\">20512028<\/a>.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.genre=article&rft.atitle=The+accuracy+of+death+certificate+completion+in+a+suburban+community&rft.jtitle=The+American+Journal+of+Forensic+Medicine+and+Pathology&rft.aulast=Cambridge%2C+B.%3B+Cina%2C+S.J.&rft.au=Cambridge%2C+B.%3B+Cina%2C+S.J.&rft.date=2010&rft.volume=31&rft.issue=3&rft.pages=232%E2%80%93235&rft_id=info:doi\/10.1097%2FPAF.0b013e3181e5e0e2&rft_id=info:pmid\/20512028&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<li id=\"cite_note-SnyderRed14-13\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-SnyderRed14_13-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation Journal\">Snyder, M.L.; Love, S.A.; Sorlie, P.D. et al. (2014). <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.pubmedcentral.nih.gov\/articlerender.fcgi?tool=pmcentrez&artid=PMC4113199\" target=\"_blank\">\"Redistribution of heart failure as the cause of death: the Atherosclerosis Risk in Communities Study\"<\/a>. <i>Population Health Metrics<\/i> <b>12<\/b> (1): 10. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/Digital_object_identifier\" target=\"_blank\">doi<\/a>:<a rel=\"external_link\" class=\"external text\" href=\"http:\/\/dx.doi.org\/10.1186%2F1478-7954-12-10\" target=\"_blank\">10.1186\/1478-7954-12-10<\/a>. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/PubMed_Central\" target=\"_blank\">PMC<\/a> <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC4113199\/\" target=\"_blank\">PMC4113199<\/a>. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/PubMed_Identifier\" target=\"_blank\">PMID<\/a> <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.ncbi.nlm.nih.gov\/pubmed\/24716810\" target=\"_blank\">24716810<\/a><span class=\"printonly\">. <a rel=\"external_link\" class=\"external free\" href=\"http:\/\/www.pubmedcentral.nih.gov\/articlerender.fcgi?tool=pmcentrez&artid=PMC4113199\" target=\"_blank\">http:\/\/www.pubmedcentral.nih.gov\/articlerender.fcgi?tool=pmcentrez&artid=PMC4113199<\/a><\/span>.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.genre=article&rft.atitle=Redistribution+of+heart+failure+as+the+cause+of+death%3A+the+Atherosclerosis+Risk+in+Communities+Study&rft.jtitle=Population+Health+Metrics&rft.aulast=Snyder%2C+M.L.%3B+Love%2C+S.A.%3B+Sorlie%2C+P.D.+et+al.&rft.au=Snyder%2C+M.L.%3B+Love%2C+S.A.%3B+Sorlie%2C+P.D.+et+al.&rft.date=2014&rft.volume=12&rft.issue=1&rft.pages=10&rft_id=info:doi\/10.1186%2F1478-7954-12-10&rft_id=info:pmc\/PMC4113199&rft_id=info:pmid\/24716810&rft_id=http%3A%2F%2Fwww.pubmedcentral.nih.gov%2Farticlerender.fcgi%3Ftool%3Dpmcentrez%26artid%3DPMC4113199&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<li id=\"cite_note-GermanTheAcc11-14\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-GermanTheAcc11_14-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation Journal\">German, R.R.; Fink, A.K.; Heron, M. et al. (2011). \"The accuracy of cancer mortality statistics based on death certificates in the United States\". <i>Population Health Metrics<\/i> <b>35<\/b> (2): 126\u2013131. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/Digital_object_identifier\" target=\"_blank\">doi<\/a>:<a rel=\"external_link\" class=\"external text\" href=\"http:\/\/dx.doi.org\/10.1016%2Fj.canep.2010.09.005\" target=\"_blank\">10.1016\/j.canep.2010.09.005<\/a>. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/PubMed_Identifier\" target=\"_blank\">PMID<\/a> <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.ncbi.nlm.nih.gov\/pubmed\/20952269\" target=\"_blank\">20952269<\/a>.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.genre=article&rft.atitle=The+accuracy+of+cancer+mortality+statistics+based+on+death+certificates+in+the+United+States&rft.jtitle=Population+Health+Metrics&rft.aulast=German%2C+R.R.%3B+Fink%2C+A.K.%3B+Heron%2C+M.+et+al.&rft.au=German%2C+R.R.%3B+Fink%2C+A.K.%3B+Heron%2C+M.+et+al.&rft.date=2011&rft.volume=35&rft.issue=2&rft.pages=126%E2%80%93131&rft_id=info:doi\/10.1016%2Fj.canep.2010.09.005&rft_id=info:pmid\/20952269&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<li id=\"cite_note-ParrishAss95-15\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-ParrishAss95_15-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation book\">Parrish, Gib (1995). <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.cdc.gov\/nchs\/data\/ice\/ice95v1\/ice_i.pdf\" target=\"_blank\">\"Assessing and improving the quality of data from medical examiners and coroners\"<\/a>. 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International Association of Coroners and Medical Examiners<span class=\"printonly\">. <a rel=\"external_link\" class=\"external free\" href=\"http:\/\/www.theiacme.com\/\" target=\"_blank\">http:\/\/www.theiacme.com\/<\/a><\/span><span class=\"reference-accessdate\">. Retrieved 01 April 2015<\/span>.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Abook&rft.genre=bookitem&rft.btitle=International+Association+of+Coroners+and+Medical+Examiners+-+Home&rft.atitle=&rft.pub=International+Association+of+Coroners+and+Medical+Examiners&rft_id=http%3A%2F%2Fwww.theiacme.com%2F&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<li id=\"cite_note-APIHome-30\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-APIHome_30-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation web\"><a rel=\"external_link\" class=\"external text\" href=\"http:\/\/www.pathologyinformatics.org\/\" target=\"_blank\">\"Association for Pathology Informatics\"<\/a>. Association for Pathology Informatics<span class=\"printonly\">. <a rel=\"external_link\" class=\"external free\" href=\"http:\/\/www.pathologyinformatics.org\/\" target=\"_blank\">http:\/\/www.pathologyinformatics.org\/<\/a><\/span><span class=\"reference-accessdate\">. Retrieved 01 April 2015<\/span>.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Abook&rft.genre=bookitem&rft.btitle=Association+for+Pathology+Informatics&rft.atitle=&rft.pub=Association+for+Pathology+Informatics&rft_id=http%3A%2F%2Fwww.pathologyinformatics.org%2F&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<li id=\"cite_note-ShortliffeBio14-31\"><span class=\"mw-cite-backlink\"><a href=\"#cite_ref-ShortliffeBio14_31-0\" rel=\"external_link\">\u2191<\/a><\/span> <span class=\"reference-text\"><span class=\"citation book\">Hammond, W.E.; Jaffe, C.; Cimino, J.J.; Huff, S.M. (2014). \"Standards in biomedical informatics\". In Shortliffe, E.H.; Cimino, J.J.. <i>Biomedical Informatics: Computer Applications in Health Care and Biomedicine<\/i>. pp. 211\u2013253. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/Digital_object_identifier\" target=\"_blank\">doi<\/a>:<a rel=\"external_link\" class=\"external text\" href=\"http:\/\/dx.doi.org\/10.1007%2F978-1-4471-4474-8\" target=\"_blank\">10.1007\/978-1-4471-4474-8<\/a>. <a rel=\"external_link\" class=\"external text\" href=\"http:\/\/en.wikipedia.org\/wiki\/International_Standard_Book_Number\" target=\"_blank\">ISBN<\/a> 9781447144731.<\/span><span class=\"Z3988\" title=\"ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Abook&rft.genre=bookitem&rft.btitle=Standards+in+biomedical+informatics&rft.atitle=Biomedical+Informatics%3A+Computer+Applications+in+Health+Care+and+Biomedicine&rft.aulast=Hammond%2C+W.E.%3B+Jaffe%2C+C.%3B+Cimino%2C+J.J.%3B+Huff%2C+S.M.&rft.au=Hammond%2C+W.E.%3B+Jaffe%2C+C.%3B+Cimino%2C+J.J.%3B+Huff%2C+S.M.&rft.date=2014&rft.pages=pp.%26nbsp%3B211%E2%80%93253&rft_id=info:doi\/10.1007%2F978-1-4471-4474-8&rft.isbn=9781447144731&rfr_id=info:sid\/en.wikipedia.org:Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\"><span style=\"display: none;\"> <\/span><\/span><\/span>\n<\/li>\n<\/ol><\/div>\n<h2><span class=\"mw-headline\" id=\"Notes\">Notes<\/span><\/h2>\n<p>This presentation is faithful to the original, with only a few minor changes to presentation. In some cases important information was missing from the references, and that information was added.\n<\/p>\n<!-- \nNewPP limit report\nCached time: 20181214192209\nCache expiry: 86400\nDynamic content: false\nCPU time usage: 0.693 seconds\nReal time usage: 0.714 seconds\nPreprocessor visited node count: 23474\/1000000\nPreprocessor generated node count: 36640\/1000000\nPost\u2010expand include size: 177624\/2097152 bytes\nTemplate argument size: 65007\/2097152 bytes\nHighest expansion depth: 18\/40\nExpensive parser function count: 0\/100\n-->\n\n<!-- \nTransclusion expansion time report (%,ms,calls,template)\n100.00% 695.460 1 - -total\n 86.97% 604.826 1 - Template:Reflist\n 75.80% 527.174 31 - Template:Citation\/core\n 42.95% 298.726 16 - Template:Cite_journal\n 23.57% 163.888 10 - Template:Cite_web\n 14.27% 99.227 5 - Template:Cite_book\n 8.82% 61.345 1 - Template:Infobox_journal_article\n 8.51% 59.175 1 - Template:Infobox\n 5.99% 41.663 31 - Template:Citation\/identifier\n 5.15% 35.815 80 - Template:Infobox\/row\n-->\n\n<!-- Saved in parser cache with key limswiki:pcache:idhash:7944-0!*!0!!en!*!* and timestamp 20181214192209 and revision id 24848\n -->\n<\/div><div class=\"printfooter\">Source: <a rel=\"external_link\" class=\"external\" href=\"https:\/\/www.limswiki.org\/index.php\/Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation\">https:\/\/www.limswiki.org\/index.php\/Journal:The_need_for_informatics_to_support_forensic_pathology_and_death_investigation<\/a><\/div>\n\t\t\t\t\t\t\t\t\t\t<!-- end content -->\n\t\t\t\t\t\t\t\t\t\t<div class=\"visualClear\"><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t\t<!-- end of the left (by default at least) column -->\n\t\t<div class=\"visualClear\"><\/div>\n\t\t\t\t\t\n\t\t<\/div>\n\t\t\n\n<\/body>","4eab7c6abfe5289f728109669eaa90ed_images":[],"4eab7c6abfe5289f728109669eaa90ed_timestamp":1544815329,"8b00807d95773df324df7278fa97c909_type":"article","8b00807d95773df324df7278fa97c909_title":"The development of the Public Health Research Data Management System (van Gaans et al. 2015)","8b00807d95773df324df7278fa97c909_url":"https:\/\/www.limswiki.org\/index.php\/Journal:The_development_of_the_Public_Health_Research_Data_Management_System","8b00807d95773df324df7278fa97c909_plaintext":"\n\n\t\t\n\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\n\t\t\t\tJournal:The development of the Public Health Research Data Management System\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\tFrom LIMSWiki\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\tJump to: navigation, search\n\n\t\t\t\t\t\n\t\t\t\t\tFull article title\n \nThe development of the Public Health Research Data Management SystemJournal\n \nelectronic Journal of Health InformaticsAuthor(s)\n \nvan Gaans, Deborah; D'Onise, Katina; Cardone, Tony; McDermott, RobynAuthor affiliation(s)\n \nUniversity of South Australia, James Cook UniversityPrimary contact\n \nEmail: deborah.vangaans@unisa.edu.au; Tel: +618 830 22908Year published\n \n2015Volume and issue\n \n9(1)Page(s)\n \ne10DOI\n \nNoneISSN\n \n1446-4381Distribution license\n \nCreative Commons Attribution-NonCommercial-ShareAlike 3.0 AustraliaWebsite\n \nhttp:\/\/www.ejhi.net\/ojs\/index.php\/ejhi\/article\/view\/301\/186Download\n \nhttp:\/\/www.ejhi.net\/ojs\/index.php\/ejhi\/article\/download\/301\/186 (PDF)\n\nContents\n\n1 Abstract \n2 Introduction \n3 Methods \n4 Results \n\n4.1 Design \n4.2 Access \n\n\n5 Conclusion \n6 Acknowledgements \n7 Conflicts of interest \n8 Correspondence \n9 References \n10 Notes \n\n\n\nAbstract \nThe design and development of the Public Health Research Data Management System highlights how it is possible to construct an information system, which allows greater access to well, preserved public health research data to enable it to be reused and shared. The Public Health Research Data Management System (PHRDMS) manages clinical, health service, community and survey research data within a secure web environment. The conceptual model under pinning the PHRDMS is based on three main entities: participant, community and health service. The PHRDMS was designed to provide data management to allow for data sharing and reuse. The system has been designed to enable rigorous research and ensure that: data that are unmanaged be managed, data that are disconnected be connected, data that are invisible be findable, data that are single use be reusable, within a structured collection. The PHRDMS is currently used by researchers to answer a broad range of policy relevant questions, including monitoring incidence of renal disease, cardiovascular disease, diabetes and mental health problems in different risk groups.\nKeywords: Public Health; Modelling; Database Management Systems; Secondary Use\n\nIntroduction \nEpidemiological and health related statistical information provide the evidence base for health care and policy, by providing accurate and reliable data including the health of minority and vulnerable populations.[1] However, in public health research, data management is the poor cousin of analysis, as it is often undervalued and underfunded.[2] Without accurate data there is little capacity to monitor changes in health status, to evaluate access to services and the response of services to needs, or to quantify the resources expended on health services and programs.[1]\nManaging the life cycle of scientific data presents many challenges including deciding responsibilities, funding, resource allocation, what data should be kept and for how long.[3] Research data is a valuable asset and while data management is a necessary part of good research it is not always undertaken well by the researcher. Ackerman and Osborne (2005)[4] highlight the importance of an integrated system for managing health research data to ensure the smooth transfer of data from the hospital\u2019s patient record database to the research database, and finally to statistical software for analysis.\nIn a system that emphasizes competition rather than collaboration among researchers, data sets resulting from multimillion dollar investments from tax payers sit idle inside locked computers, only available to a small number of researchers despite their containing the seeds that would allow for the exploration of a vast number of important research questions that could change the healthcare landscape.[5] There are indications that public and foundation funders of public health research wish to strengthen data sharing policies, shepherding epidemiologists down the road already travelled by geneticists.[2] Secondary research refers to the use of research data to study a problem that was not the focus of the original data collection.[6] This secondary analysis may involve the combination of one data set with another, address new questions or use new analytical methods for evaluation.[6] The benefits of data sharing are many and include:\n\n Allowing, the same data to be used to answer new questions that may be relevant far beyond the original study.[2]\n Accelerating investigations already under way and taking advantage of past investments in science.[3]\n Obtaining a statistically meaningful number of cases quicker than studies in a single centre, so the applied research results can be used quicker as well and particularly for rare diseases a critical mass of cases can be obtained in sufficient quality that no single institution could obtain.[7]\n Generates opportunities for additional publications through collaboration, and may increase the citation rate of primary publications.[8]\n Once investments in infrastructure have been made, recycling and combining data provide access to maximum knowledge for minimal additional cost.[2]\n Sharing data increases the visibility and relevance of research output.[8]\n Being able to extend the study dataset through linking to other data sources has the potential to enable the important research questions for the study to be better answered, with the added benefit of generally reducing the burden on respondents.[9]\nTo enable reuse, data must be well preserved. Community standards for data description and exchange are crucial as these facilitate data reuse by making it easier to import, export, compare, combine and understand data.[3] As Pisani (2010)[2] states improved documentation will lead to data being combined more easily across time, locations and sources.\nThe development of public health information systems requires an understanding of the principles, practices, structures and settings in which these systems operate.[10] Issues of conflicting data standards, the need for interoperable tools for exchanging and sharing data and the need for innovative solutions to address integrated disease surveillance, among many other issues, are driving forces to formalize design strategies in public health information.[10] Details regarding the specific design and features of such databases are not readily available in the literature and yet, this type of practical information would be valuable for clinicians and researchers who wish to design database systems tailored to their particular requirements.[4]\n\nMethods \nThe conceptualization of the Public Health Data Management System (PHRDMS) occurred through a series of consultative meetings between public health researchers, information technology business intelligence specialists and data managers. The Public Health Data Management System (PHRDMS) stores data, metadata and documents that are generated throughout the lifecycle of research projects. The PHRDMS provides a structure to allow research data to be maintained in accordance with a large number of laws, regulations and conventions, and was designed specifically to meet the standards of: University of South Australia, (2012) UniSA Framework for the Responsible Conduct of Research[11], James Cook University, (2012) Code of Conduct[12], and National Health and Medical Research Council, (2007) Australian Code for the Responsible Conduct of Research. [13] The guidelines were synthesised into the following core set, that have underpinned the development of the PHRDMS:\n\n Researchers should retain research data and primary materials for sufficient time to allow reference to them by other researchers and interested parties. For published research data, this may be for as long as interest and discussion persist following publication. \n When considering how long research data and primary materials are to be retained, the researcher must take account of professional standards, legal requirements and contractual arrangements. \n Research data should be made available for use by other researchers unless this is prevented by ethical, privacy or confidentiality matters. \n Research data should be retained for at least the minimum period specified in the institutional policy. \n The institutional policy on the secure and safe disposal of primary materials and research data must be followed (note that for patient records these are to be kept indefinitely).\n Researchers must manage research data and primary materials in accordance with the policy of the institution. \n Sufficient materials and data are retained to justify the outcomes of the research and to defend them if they are challenged. That security and confidentiality of the data is undertaken and maintained. \n Keep clear and accurate records of the research methods and data sources, including any approvals granted, during and after the research process. \n Ensure that research data and primary materials are kept in safe and secure storage provided, even when not in current use. \n Provide the same level of care and protection to primary research records, such as laboratory notebooks, as to the analysed research data. \n Retain research data, including electronic data, in a durable, indexed and retrievable form. \n Maintain a catalogue of research data in an accessible form. \n Manage research data and primary materials according to ethical protocols and relevant legislation. \n Maintain confidentiality of research data and primary materials. Researchers given access to confidential information must maintain that confidentiality. \n Primary materials and confidential research data must be kept in secure storage. Confidential information must only be used in ways agreed with those who provided it. Particular care must be exercised when confidential data are made available for discussion.\n\r\n\nThe PHRDMS was constructed by the Information Strategy and Technology Services Unit within the University of South Australia through consultation with population health researchers. During the design phase of the PHRDMS, specific researcher requirements were identified, these included:\n\n Ensure data is accessible to who need it: including remote regions, different universities.\n Easily used by researchers as it fits with their business process Eg. Data entry forms look like the questionnaire.\n Ability to deidentify \/ reidentify participants if necessary.\n Ability to link data from other sources.\n Ability to create reports for: individual participants, communities, health services, projects.\n Allow for version control of project documents and derived datasets.\n Data fits with International\/ national standards where possible.\n Temporal view of data.\n Logging of data extracts.\n Formal process of data upload and extraction.\n Metadata development, cleaning, maintenance.\n Developing and implementing protocols regarding storage, retrieval, security and integrity of the data to be used by key stakeholders. \nResults \nAll of the data, metadata and documents that form part of any public health research project are captured within the PHRDMS. As can be seen in Figure 1 this includes ethics agreements, reports, questionnaires, methods, approvals, publications, data dictionary, and study protocols. \n\n\n\n\n\n\n\n\n\n Figure 1. Data, Metadata and Documents that are captured within the Public Health Research Data Management System\n\n\n\nA copy of the plain language statement for each research project, as required by ethical standards of research, is held within the PHRDM System as a .pdf file. Participant consent agreements are stored as a .pdf file for each project participant within the PHRDM System. Through the security structure of the PHRDM System research participants are deidentified however the system also has the capability to make data reidentifiable (to system administrator roles only) so that reports can be sent to individual participants, participants can be contacted for further involvement in research projects, and also for data linkage purposes. \nThe participant\u2019s consent agreements often have a series of statements relating to particular data \/ information and the participant can choose to consent to the individual statements. These statements often reflect being contacted for further research projects, having the participants data forwarded on to their primary health care clinic etc. These statements are captured with the participants consent within the PHRDM System, so that the agreement between the participant and the project can be maintained during data extraction and reporting. The research projects often have agreements with Communities, Primary Health Care Clinics, hospitals, data custodians etc. Copies of these agreements are held as .pdfs within the PHRDM System for each research project. \nOne of the added features of the PHRDMS is that it also maintains an audit trail and history of all data modifications. The audit trail begins from the time the data has been entered into the system and all modifications to the data are recorded in audit tables which are maintained as part of the system. The audit tables are a log of the change that has been made to the data, at what time and by who. Data that has been manually entered into the database can be corrected through the data entry screens and bulk uploaded data will be backed out of the PHRDM system and then reloaded. \nAll surveys\/ questionnaires that are used within a research project undergo an ethics approval process before they are administered. Sometimes a single survey\/questionnaire will undergo a number of revisions. All versions of the surveys\/questionnaires that have been used within the research project are maintained within the PHRDM System. \nThe PHRDMS stores demographic, vaccinations, diagnosed chronic conditions, medications, lifestyle measures, pathology results, mental health, management plans, allied health and specialist referrals, gestational data and child data. The system allows the system administrator to add clinical variables as needed by the research project, as well as surveys.\n\nDesign \nThe PHRDMS is a very flexible user friendly system. The data model that underlies the PHRDMS is based on three distinct entities and the relationships between them (Figure 2). This data model allows users to customise their view of the database to the variables that they are collecting for their own research project. Users can therefore add new variables to the participant, community, or Primary Health Care Centre entity. The system also allows new questions and answers from questionnaires to be added. The PHRDMS does not store derived variables, only raw data, which allows the users to classify the data according to individual researcher requirements.\n\n\n\n\n\n\n\n\n\n Figure 2. The Entities within the Public Health Research Data Management System\n\n\n\nThe PHRDM System produces a number of standard research reports and individual clinical variables can be extracted into an excel spreadsheet. The system also allows codes to be assigned to data so that it can be used directly within Stata[13] once it has been extracted from the system. The system also produces a log report to capture the history of changes made to the data within the system due to data corrections. All data extracts are recorded within the PHRDMS to maintain a history of what data was extracted by who, at what time, for what purpose. \nThe PHRDM system allows for data linkage to external data sets. Data from external data custodians is able to be linked to the participant, community, primary health care centre, or the participant\u2019s pathology result. The data is initially held in a staging area while it is reviewed against the current set of data variable rules. Any external data that does not match the existing data variable rules is able to be reviewed by the system administrator and either be corrected (in the case of a data error) or rejected from the data upload. The data upload and cleansing process is captured within the PHRDMS to maintain an activity log for administration purposes. \nDue to the nature of Public Health research many of the projects contained within the PHRDMS collect the same clinical variables and often administer the same questionnaires. The PHRDMS maintains projects separately but with many of the research staff working across numerous projects it is possible for data to be viewed as a total collection (Figure 3), allowing for variables from a number of projects to be reused to answer new research questions.\n\n\n\n\n\n\n\n\n\n Figure 3. The Relationship between projects within the Public Health Research Data Management System\n\n\n\nAccess \nInitial access to the database is provided through the Australian Access Federation, which will allow researchers into the database, who belong to institutions that are registered with the Australian Access Federation. Therefore allowing researchers access to the system anywhere they are able to get access to the internet. Researchers are then able to be granted access to project data for which they have signed project confidentiality agreements. Access to the project data is then governed by the role that is assigned by the system administrator. The PHRDMS manages data access through the following roles: System Administrator, Researcher, and Data Entry. Functionality within the database is applied to each role with all roles other than system administrator being applied to a specific project.\n\nConclusion \nThe Public Health Data Management System stores and manages a large cohort of Indigenous adults and children, both \u201cwell\u201d and who already have a chronic condition on study enrolment. The dataset will grow due to recruitment of participants over time and increase in scope as new datasets are linked to the cohort. The information generated from the system will be used for the immediate research aims of the Centre of Research Excellence in Prevention of Chronic Conditions and will be able to be used by researchers into the future to answer a much broader range of policy relevant questions, including monitoring incidence of renal, cardiovascular disease, diabetes and mental health problems in different risk groups. This cohort will include these participants at baseline, but also be able to identify incidence of disease in those free of problems at recruitment. \nThe design and development of the Public Health Research Data Management System highlights how it is possible to construct an information system which allows greater access to well preserved public health research data to enable it to be reused and shared. While the development of the PHRDMS has been based on Australian guidelines, the conceptual model under pinning the PHRDMS which is based on the three main entities: participant, community and health service could be used internationally.\n\nAcknowledgements \nThe research reported in this paper is a project of the Australian Primary Health Care Research Institute, which is supported by a grant from the Commonwealth of Australia as represented by the Department of Health. The information and opinions contained in it do not necessarily reflect the views or policy of the Australian Primary Health Care Research Institute or the Australian Government Department of Health.\n\nConflicts of interest \nNone declared.\n\nCorrespondence \nDr Deborah van Gaans (Corresponding Author)\r\n\nManager: Research Data\r\n\nCentre for Research Excellence in the Prevention of Chronic Conditions in Rural and Remote Populations\r\n\nSchool of Population Health, University of South Australia\r\n\nLevel 8, South Australian Health & Medical Research Institute (SAMHRI)\r\n\nNorth Terrace, Adelaide, 5001\r\n\nTel: +618 830 22908\r\n\ndeborah.vangaans@unisa.edu.au\r\n\nResearch Associate\r\n\nDept. of Geography, Environment and Population,\r\n\nThe University of Adelaide,\r\n\nNorth Terrace, Adelaide, South Australia, 5005\r\n\nDr Katina D\u2019Onise\r\n\nSenior Research Fellow\r\n\nCentre for Research Excellence in the Prevention of Chronic Conditions in Rural and Remote Populations\r\n\nSchool of Population Health, University of South Australia\r\n\nLevel 8, South Australian Health & Medical Research Institute (SAMHRI)\r\n\nNorth Terrace, Adelaide, 5001\r\n\nTel: +618 830 21221\r\n\nkatina.d\u2019onise@unisa.edu.au\r\n\nMr. Tony Cardone\r\n\nBusiness Intelligence Specialist\r\n\nChancellery,\r\n\nBusiness Intelligence and Planning, University of South Australia\r\n\nCity West Campus\r\n\nNorth Terrace, Adelaide, 5001\r\n\nTel: +618 830 27286\r\n\ntony.cardone@unisa.edu.au\r\n\nProf Robyn McDermott\r\n\nProfessor of Public Health Medicine\r\n\nCollege of Public Health, Medical and Veterinary Sciences\r\n\nJames Cook University, PO Box 6811, Cairns QLD\r\n\n4870 Australia\r\n\nTel (07) 4232 1575\r\n\nrobyn.mcdermott@jcu.edu.au\r\n\n\nReferences \n\n\n\u2191 1.0 1.1 Thompson, S.C.; Woods, J.A.; Katzenellenbogen, J.M. (2012). \"The quality of indigenous identification in administrative health data in Australia: Insights from studies using data linkage\". BMC Medical Informatics and Decision Making 12: 133. doi:10.1186\/1472-6947-12-133. PMC PMC3536611. PMID 23157943. http:\/\/www.pubmedcentral.nih.gov\/articlerender.fcgi?tool=pmcentrez&artid=PMC3536611 .   \n\n\u2191 2.0 2.1 2.2 2.3 2.4 Pisani, E.; AbouZahr, C.. \"Sharing health data: Good intentions are not enough\". Bulletin of the World Health Organization 88 (6): 462\u2013466. doi:10.2471\/BLT.09.074393. PMC PMC2878150. PMID 20539861. http:\/\/www.pubmedcentral.nih.gov\/articlerender.fcgi?tool=pmcentrez&artid=PMC2878150 .   \n\n\u2191 3.0 3.1 3.2 Lynch, C.. \"Big data: How do your data grow?\". Nature 455 (7209): 28\u201329. doi:10.1038\/455028a. PMID 18769419.   \n\n\u2191 4.0 4.1 Ackerman, I.N.; Osborne, R.H.. \"Integrating data to facilitate clinical research: A case study\". Informatics in Primary Care 13 (4): 263\u2013270. PMID 16510023.   \n\n\u2191 Carvalho, E.C.; Batilana, A.P.; Simkins, J. et al.. \"Application description and policy model in collaborative environment for sharing of information on epidemiological and clinical research data sets\". PLoS One 5 (2): e9314. doi:10.1371\/journal.pone.0009314. PMC PMC2824801. PMID 20174560. http:\/\/www.pubmedcentral.nih.gov\/articlerender.fcgi?tool=pmcentrez&artid=PMC2824801 .   \n\n\u2191 6.0 6.1 Law, Margaret. [http:\/\/www.iassistdata.org\/iq\/reduce-reuse-recycle-issues-secondary-use-research-data \"Reduce, reuse, recycle: Issues\nin the secondary use of research data\"]. IASSIST Quarterly 29 (Spring): 5. http:\/\/www.iassistdata.org\/iq\/reduce-reuse-recycle-issues-secondary-use-research-data .   \n\n\u2191 Elger, B.S.; Iavindrasana, J.; Iacono, L.L. et al.. \"Strategies for health data exchange for secondary, cross-institutional clinical research\". Computer Methods and Programs in Biomedicine 99 (3): 230\u2013251. doi:10.1016\/j.cmpb.2009.12.001. PMID 20089327.   \n\n\u2191 8.0 8.1 Piwowar, H.A.; Becich, M.J.; Bilofsky, H.; Crowley, R.S.; caBIG Data Sharing and Intellectual Capital Workspace. \"Towards a data sharing culture: Recommendations for leadership from academic health centers\". PLoS Medicine 5 (9): e183. doi:10.1371\/journal.pmed.0050183. PMC PMC2528049. PMID 18767901. http:\/\/www.pubmedcentral.nih.gov\/articlerender.fcgi?tool=pmcentrez&artid=PMC2528049 .   \n\n\u2191 Soloff, C.; Sanson, A.; Wake, M.; Harrison, L.. \"Enhancing longitudinal studies by linkage to national databases: Growing Up in Australia, the longitudinal study of Australian children\". International Journal of Social Research Methodology 10 (5): 349\u2013363. doi:10.1080\/13645570701677060.   \n\n\u2191 10.0 10.1 Reeder, B.; Hills, R.A.; Demiris, G.; Revere, D.; Pina, J.. \"Reusable design: A proposed approach to public health informatics system design\". BMC Public Health 11: 116. doi:10.1186\/1471-2458-11-116. PMC PMC3053242. PMID 21333000. http:\/\/www.pubmedcentral.nih.gov\/articlerender.fcgi?tool=pmcentrez&artid=PMC3053242 .   \n\n\u2191 \"UniSA Framework for the Responsible Conduct of Research\". University of South Australia. 2012. http:\/\/w3.unisa.edu.au\/RES\/ethics\/integrity\/default.asp . Retrieved 26 November 2012 .   \n\n\u2191 \"Code of Conduct\". James Cook University. 2012. http:\/\/www.jcu.edu.au\/policy\/governance\/conduct\/JCUDEV_007161.html . Retrieved 26 November 2012 .   \n\n\u2191 13.0 13.1  (PDF) Australian Code for the Responsible Conduct of Research. National Health and Medical Research Council, Australian Government. 2007. ISBN 1864964383. https:\/\/www.nhmrc.gov.au\/_files_nhmrc\/publications\/attachments\/r39_australian_code_responsible_conduct_research_150107.pdf . Retrieved 26 November 2012 .   \n\n\nNotes \nThis presentation is faithful to the original, with only a few minor changes to presentation. In some cases important information was missing from the references, and that information was added. The figures have been moved around slightly to be closer to their reference in the text.\n\n\n\n\n\n\nSource: <a rel=\"external_link\" class=\"external\" href=\"https:\/\/www.limswiki.org\/index.php\/Journal:The_development_of_the_Public_Health_Research_Data_Management_System\">https:\/\/www.limswiki.org\/index.php\/Journal:The_development_of_the_Public_Health_Research_Data_Management_System<\/a>\n\t\t\t\t\tCategories: LIMSwiki journal articles (added in 2016)LIMSwiki journal articles (all)LIMSwiki journal articles on public health informaticsLIMSwiki journal articles on software\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\n\t\t\t\n\t\t\n\t\t\n\t\t\tNavigation menu\n\t\t\t\t\t\n\t\t\tViews\n\n\t\t\t\n\t\t\t\t\n\t\t\t\tJournal\n\t\t\t\tDiscussion\n\t\t\t\tView source\n\t\t\t\tHistory\n\t\t\t\t\n\t\t\t\t\t\t\t\n\t\t\n\t\t\t\t\n\t\t\t\tPersonal tools\n\n\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\tLog in\n\t\t\t\t\t\t\t\t\t\t\t\t\tRequest account\n\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\n\t\t\t\n\t\t\t\n\t\t\t\t\n\t\t\t\n\t\t\t\t\n\t\tNavigation\n\t\t\n\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\tMain page\n\t\t\t\t\t\t\t\t\t\t\tRecent changes\n\t\t\t\t\t\t\t\t\t\t\tRandom page\n\t\t\t\t\t\t\t\t\t\t\tHelp\n\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\n\t\t\n\t\t\t\n\t\t\tSearch\n\n\t\t\t\n\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t \n\t\t\t\t\t\t\n\t\t\t\t\n\n\t\t\t\t\t\t\t\n\t\t\n\t\t\t\n\t\t\tTools\n\n\t\t\t\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\tWhat links here\n\t\t\t\t\t\t\t\t\t\t\tRelated changes\n\t\t\t\t\t\t\t\t\t\t\tSpecial pages\n\t\t\t\t\t\t\t\t\t\t\tPermanent link\n\t\t\t\t\t\t\t\t\t\t\tPage information\n\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\n\t\t\n\t\t\n\t\tPrint\/export\n\t\t\n\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\tCreate a book\n\t\t\t\t\t\t\t\t\t\t\tDownload as PDF\n\t\t\t\t\t\t\t\t\t\t\tDownload as Plain text\n\t\t\t\t\t\t\t\t\t\t\tPrintable version\n\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\n\t\t\n\t\t\n\t\tSponsors\n\t\t\n\t\t\t \r\n\n\t\r\n\n\t\r\n\n\t\r\n\n\t\n\t\r\n\n \r\n\n\t\n\t\r\n\n \r\n\n\t\n\t\r\n\n\t\n\t\r\n\n\t\r\n\n\t\r\n\n\t\r\n\t\t\n\t\t\n\t\t\t\n\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t This page was last modified on 12 February 2016, at 21:25.\n\t\t\t\t\t\t\t\t\tThis page has been accessed 932 times.\n\t\t\t\t\t\t\t\t\tContent is available under a Creative Commons Attribution-ShareAlike 4.0 International License unless otherwise noted.\n\t\t\t\t\t\t\t\t\tPrivacy policy\n\t\t\t\t\t\t\t\t\tAbout LIMSWiki\n\t\t\t\t\t\t\t\t\tDisclaimers\n\t\t\t\t\t\t\t\n\t\t\n\t\t\n\t\t\n\n","8b00807d95773df324df7278fa97c909_html":"<body class=\"mediawiki ltr sitedir-ltr ns-206 ns-subject page-Journal_The_development_of_the_Public_Health_Research_Data_Management_System skin-monobook action-view\">\n<div id=\"rdp-ebb-globalWrapper\">\n\t\t<div id=\"rdp-ebb-column-content\">\n\t\t\t<div id=\"rdp-ebb-content\" class=\"mw-body\" role=\"main\">\n\t\t\t\t<a id=\"rdp-ebb-top\"><\/a>\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t<h1 id=\"rdp-ebb-firstHeading\" class=\"firstHeading\" lang=\"en\">Journal:The development of the Public Health Research Data Management System<\/h1>\n\t\t\t\t\n\t\t\t\t<div id=\"rdp-ebb-bodyContent\" class=\"mw-body-content\">\n\t\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\n\n\t\t\t\t\t<!-- start content -->\n\t\t\t\t\t<div id=\"rdp-ebb-mw-content-text\" lang=\"en\" dir=\"ltr\" class=\"mw-content-ltr\">\n\n\n<h2><span class=\"mw-headline\" id=\"Abstract\">Abstract<\/span><\/h2>\n<p>The design and development of the Public Health Research Data Management System highlights how it is possible to construct an <a href=\"https:\/\/www.limswiki.org\/index.php\/Information\" title=\"Information\" target=\"_blank\" class=\"wiki-link\" data-key=\"6300a14d9c2776dcca0999b5ed940e7d\">information<\/a> system, which allows greater access to well, preserved public health research data to enable it to be reused and shared. The Public Health Research Data Management System (PHRDMS) manages clinical, health service, community and survey research data within a secure web environment. The conceptual model under pinning the PHRDMS is based on three main entities: participant, community and health service. The PHRDMS was designed to provide data management to allow for data sharing and reuse. The system has been designed to enable rigorous research and ensure that: data that are unmanaged be managed, data that are disconnected be connected, data that are invisible be findable, data that are single use be reusable, within a structured collection. The PHRDMS is currently used by researchers to answer a broad range of policy relevant questions, including monitoring incidence of renal disease, cardiovascular disease, diabetes and mental health problems in different risk groups.\n<\/p><p><b>Keywords:<\/b> Public Health; Modelling; Database Management Systems; Secondary Use\n<\/p>\n<h2><span class=\"mw-headline\" id=\"Introduction\">Introduction<\/span><\/h2>\n<p>Epidemiological and health related statistical information provide the evidence base for health care and policy, by providing accurate and reliable data including the health of minority and vulnerable populations.<sup id=\"rdp-ebb-cite_ref-ThompsonTheQual12_1-0\" class=\"reference\"><a href=\"#cite_note-ThompsonTheQual12-1\" rel=\"external_link\">[1]<\/a><\/sup> However, in public health research, data management is the poor cousin of analysis, as it is often undervalued and underfunded.<sup id=\"rdp-ebb-cite_ref-PisaniSharing10_2-0\" class=\"reference\"><a href=\"#cite_note-PisaniSharing10-2\" rel=\"external_link\">[2]<\/a><\/sup> Without accurate data there is little capacity to monitor changes in health status, to evaluate access to services and the response of services to needs, or to quantify the resources expended on health services and programs.<sup id=\"rdp-ebb-cite_ref-ThompsonTheQual12_1-1\" class=\"reference\"><a href=\"#cite_note-ThompsonTheQual12-1\" rel=\"external_link\">[1]<\/a><\/sup>\n<\/p><p>Managing the life cycle of scientific data presents many challenges including deciding responsibilities, funding, resource allocation, what data should be kept and for how long.<sup id=\"rdp-ebb-cite_ref-LynchHow08_3-0\" class=\"reference\"><a href=\"#cite_note-LynchHow08-3\" rel=\"external_link\">[3]<\/a><\/sup> Research data is a valuable asset and while data management is a necessary part of good research it is not always undertaken well by the researcher. Ackerman and Osborne (2005)<sup id=\"rdp-ebb-cite_ref-AckermanInt05_4-0\" class=\"reference\"><a href=\"#cite_note-AckermanInt05-4\" rel=\"external_link\">[4]<\/a><\/sup> highlight the importance of an integrated system for managing health research data to ensure the smooth transfer of data from the <a href=\"https:\/\/www.limswiki.org\/index.php\/Hospital\" title=\"Hospital\" target=\"_blank\" class=\"wiki-link\" data-key=\"b8f070c66d8123fe91063594befebdff\">hospital<\/a>\u2019s patient record database to the research database, and finally to statistical software for analysis.\n<\/p><p>In a system that emphasizes competition rather than collaboration among researchers, data sets resulting from multimillion dollar investments from tax payers sit idle inside locked computers, only available to a small number of researchers despite their containing the seeds that would allow for the exploration of a vast number of important research questions that could change the healthcare landscape.<sup id=\"rdp-ebb-cite_ref-CarvalhoApp10_5-0\" class=\"reference\"><a href=\"#cite_note-CarvalhoApp10-5\" rel=\"external_link\">[5]<\/a><\/sup> There are indications that public and foundation funders of public health research wish to strengthen data sharing policies, shepherding epidemiologists down the road already travelled by geneticists.<sup id=\"rdp-ebb-cite_ref-PisaniSharing10_2-1\" class=\"reference\"><a href=\"#cite_note-PisaniSharing10-2\" rel=\"external_link\">[2]<\/a><\/sup> Secondary research refers to the use of research data to study a problem that was not the focus of the original data collection.<sup id=\"rdp-ebb-cite_ref-LawReduce05_6-0\" class=\"reference\"><a href=\"#cite_note-LawReduce05-6\" rel=\"external_link\">[6]<\/a><\/sup> This secondary analysis may involve the combination of one data set with another, address new questions or use new analytical methods for evaluation.<sup id=\"rdp-ebb-cite_ref-LawReduce05_6-1\" class=\"reference\"><a href=\"#cite_note-LawReduce05-6\" rel=\"external_link\">[6]<\/a><\/sup> The benefits of data sharing are many and include:\n<\/p>\n<ul><li> Allowing, the same data to be used to answer new questions that may be relevant far beyond the original study.<sup id=\"rdp-ebb-cite_ref-PisaniSharing10_2-2\" class=\"reference\"><a href=\"#cite_note-PisaniSharing10-2\" rel=\"external_link\">[2]<\/a><\/sup><\/li><\/ul>\n<ul><li> Accelerating investigations already under way and taking advantage of past investments in science.<sup id=\"rdp-ebb-cite_ref-LynchHow08_3-1\" class=\"reference\"><a href=\"#cite_note-LynchHow08-3\" rel=\"external_link\">[3]<\/a><\/sup><\/li><\/ul>\n<ul><li> Obtaining a statistically meaningful number of cases quicker than studies in a single centre, so the applied research results can be used quicker as well and particularly for rare diseases a critical mass of cases can be obtained in sufficient quality that no single institution could obtain.<sup id=\"rdp-ebb-cite_ref-ElgerStrat10_7-0\" class=\"reference\"><a href=\"#cite_note-ElgerStrat10-7\" rel=\"external_link\">[7]<\/a><\/sup><\/li><\/ul>\n<ul><li> Generates opportunities for additional publications through collaboration, and may increase the citation rate of primary publications.<sup id=\"rdp-ebb-cite_ref-PiwowarTowards08_8-0\" class=\"reference\"><a href=\"#cite_note-PiwowarTowards08-8\" rel=\"external_link\">[8]<\/a><\/sup><\/li><\/ul>\n<ul><li> Once investments in infrastructure have been made, recycling and combining data provide access to maximum knowledge for minimal additional cost.<sup id=\"rdp-ebb-cite_ref-PisaniSharing10_2-3\" class=\"reference\"><a href=\"#cite_note-PisaniSharing10-2\" rel=\"external_link\">[2]<\/a><\/sup><\/li><\/ul>\n<ul><li> Sharing data increases the visibility and relevance of research output.<sup id=\"rdp-ebb-cite_ref-PiwowarTowards08_8-1\" class=\"reference\"><a href=\"#cite_note-PiwowarTowards08-8\" rel=\"external_link\">[8]<\/a><\/sup><\/li><\/ul>\n<ul><li> Being able to extend the study dataset through linking to other data sources has the potential to enable the important research questions for the study to be better answered, with the added benefit of generally reducing the burden on respondents.<sup id=\"rdp-ebb-cite_ref-SoloffEnhancing07_9-0\" class=\"reference\"><a href=\"#cite_note-SoloffEnhancing07-9\" rel=\"external_link\">[9]<\/a><\/sup><\/li><\/ul>\n<p>To enable reuse, data must be well preserved. Community standards for data description and exchange are crucial as these facilitate data reuse by making it easier to import, export, compare, combine and understand data.<sup id=\"rdp-ebb-cite_ref-LynchHow08_3-2\" class=\"reference\"><a href=\"#cite_note-LynchHow08-3\" rel=\"external_link\">[3]<\/a><\/sup> As Pisani (2010)<sup id=\"rdp-ebb-cite_ref-PisaniSharing10_2-4\" class=\"reference\"><a href=\"#cite_note-PisaniSharing10-2\" rel=\"external_link\">[2]<\/a><\/sup> states improved documentation will lead to data being combined more easily across time, locations and sources.\n<\/p><p>The development of <a href=\"https:\/\/www.limswiki.org\/index.php\/Public_health_informatics\" title=\"Public health informatics\" target=\"_blank\" class=\"wiki-link\" data-key=\"f0372a80f101e9f6fd00490dc1ebcedd\">public health information systems<\/a> requires an understanding of the principles, practices, structures and settings in which these systems operate.<sup id=\"rdp-ebb-cite_ref-ReederReusable11_10-0\" class=\"reference\"><a href=\"#cite_note-ReederReusable11-10\" rel=\"external_link\">[10]<\/a><\/sup> Issues of conflicting data standards, the need for interoperable tools for exchanging and sharing data and the need for innovative solutions to address integrated disease surveillance, among many other issues, are driving forces to formalize design strategies in public health information.<sup id=\"rdp-ebb-cite_ref-ReederReusable11_10-1\" class=\"reference\"><a href=\"#cite_note-ReederReusable11-10\" rel=\"external_link\">[10]<\/a><\/sup> Details regarding the specific design and features of such databases are not readily available in the literature and yet, this type of practical information would be valuable for clinicians and researchers who wish to design database systems tailored to their particular requirements.<sup id=\"rdp-ebb-cite_ref-AckermanInt05_4-1\" class=\"reference\"><a href=\"#cite_note-AckermanInt05-4\" rel=\"external_link\">[4]<\/a><\/sup>\n<\/p>\n<h2><span class=\"mw-headline\" id=\"Methods\">Methods<\/span><\/h2>\n<p>The conceptualization of the Public Health Data Management System (PHRDMS) occurred through a series of consultative meetings between public health researchers, information technology business intelligence specialists and data managers. The Public Health Data Management System (PHRDMS) stores data, metadata and documents that are generated throughout the lifecycle of research projects. The PHRDMS provides a structure to allow research data to be maintained in accordance with a large number of laws, regulations and conventions, and was designed specifically to meet the standards of: University of South Australia, (2012) UniSA Framework for the Responsible Conduct of Research<sup id=\"rdp-ebb-cite_ref-USAUniSA12_11-0\" class=\"reference\"><a href=\"#cite_note-USAUniSA12-11\" rel=\"external_link\">[11]<\/a><\/sup>, James Cook University, (2012) Code of Conduct<sup id=\"rdp-ebb-cite_ref-JCUCode12_12-0\" class=\"reference\"><a href=\"#cite_note-JCUCode12-12\" rel=\"external_link\">[12]<\/a><\/sup>, and National Health and Medical Research Council, (2007) Australian Code for the Responsible Conduct of Research. <sup id=\"rdp-ebb-cite_ref-NHMRCAust07_13-0\" class=\"reference\"><a href=\"#cite_note-NHMRCAust07-13\" rel=\"external_link\">[13]<\/a><\/sup> The guidelines were synthesised into the following core set, that have underpinned the development of the PHRDMS:\n<\/p>\n<ul><li> Researchers should retain research data and primary materials for sufficient time to allow reference to them by other researchers and interested parties. For published research data, this may be for as long as interest and discussion persist following publication. <\/li><\/ul>\n<ul><li> When considering how long research data and primary materials are to be retained, the researcher must take account of professional standards, legal requirements and contractual arrangements. <\/li><\/ul>\n<ul><li> Research data should be made available for use by other researchers unless this is prevented by ethical, privacy or confidentiality matters. <\/li><\/ul>\n<ul><li> Research data should be retained for at least the minimum period specified in the institutional policy. <\/li><\/ul>\n<ul><li> The institutional policy on the secure and safe disposal of primary materials and research data must be followed (note that for patient records these are to be kept indefinitely).<\/li><\/ul>\n<ul><li> Researchers must manage research data and primary materials in accordance with the policy of the institution. <\/li><\/ul>\n<ul><li> Sufficient materials and data are retained to justify the outcomes of the research and to defend them if they are challenged. That security and confidentiality of the data is undertaken and maintained. <\/li><\/ul>\n<ul><li> Keep clear and accurate records of the research methods and data sources, including any approvals granted, during and after the research process. <\/li><\/ul>\n<ul><li> Ensure that research data and primary materials are kept in safe and secure storage provided, even when not in current use. <\/li><\/ul>\n<ul><li> Provide the same level of care and protection to primary research records, such as <a href=\"https:\/\/www.limswiki.org\/index.php\/Laboratory_notebook\" title=\"Laboratory notebook\" target=\"_blank\" class=\"wiki-link\" data-key=\"be60c7be96aba8e9a84537fd8835fa54\">laboratory notebooks<\/a>, as to the analysed research data. <\/li><\/ul>\n<ul><li> Retain research data, including electronic data, in a durable, indexed and retrievable form. <\/li><\/ul>\n<ul><li> Maintain a catalogue of research data in an accessible form. <\/li><\/ul>\n<ul><li> Manage research data and primary materials according to ethical protocols and relevant legislation. <\/li><\/ul>\n<ul><li> Maintain confidentiality of research data and primary materials. Researchers given access to confidential information must maintain that confidentiality. <\/li><\/ul>\n<ul><li> Primary materials and confidential research data must be kept in secure storage. Confidential information must only be used in ways agreed with those who provided it. Particular care must be exercised when confidential data are made available for discussion.<\/li><\/ul>\n<p><br \/>\nThe PHRDMS was constructed by the Information Strategy and Technology Services Unit within the University of South Australia through consultation with population health researchers. During the design phase of the PHRDMS, specific researcher requirements were identified, these included:\n<\/p>\n<ul><li> Ensure data is accessible to who need it: including remote regions, different universities.<\/li><\/ul>\n<ul><li> Easily used by researchers as it fits with their business process Eg. Data entry forms look like the questionnaire.<\/li><\/ul>\n<ul><li> Ability to deidentify \/ reidentify participants if necessary.<\/li><\/ul>\n<ul><li> Ability to link data from other sources.<\/li><\/ul>\n<ul><li> Ability to create reports for: individual participants, communities, health services, projects.<\/li><\/ul>\n<ul><li> Allow for version control of project documents and derived datasets.<\/li><\/ul>\n<ul><li> Data fits with International\/ national standards where possible.<\/li><\/ul>\n<ul><li> Temporal view of data.<\/li><\/ul>\n<ul><li> Logging of data extracts.<\/li><\/ul>\n<ul><li> Formal process of data upload and extraction.<\/li><\/ul>\n<ul><li> Metadata development, cleaning, maintenance.<\/li><\/ul>\n<ul><li> Developing and implementing protocols regarding storage, retrieval, security and integrity of the data to be used by key stakeholders. <\/li><\/ul>\n<h2><span class=\"mw-headline\" id=\"Results\">Results<\/span><\/h2>\n<p>All of the data, metadata and documents that form part of any public health research project are captured within the PHRDMS. As can be seen in Figure 1 this includes ethics agreements, reports, questionnaires, methods, approvals, publications, data dictionary, and study protocols. \n<\/p><p><a href=\"https:\/\/www.limswiki.org\/index.php\/File:Fig1_vanGanns_eJHI2015_9-1.jpg\" class=\"image wiki-link\" target=\"_blank\" data-key=\"fe76c52aa2f4822e8aef18ea1abd461f\"><img alt=\"Fig1 vanGanns eJHI2015 9-1.jpg\" src=\"https:\/\/www.limswiki.org\/images\/5\/5a\/Fig1_vanGanns_eJHI2015_9-1.jpg\" style=\"width: 100%;max-width: 400px;height: auto;\" \/><\/a>\n<\/p>\n<div style=\"clear:both;\"><\/div>\n<table style=\"\">\n<tr>\n<td style=\"vertical-align:top;\">\n<table border=\"0\" cellpadding=\"5\" cellspacing=\"0\" style=\"\">\n\n<tr>\n<td style=\"background-color:white; padding-left:10px; padding-right:10px;\"> <blockquote><b>Figure 1.<\/b> Data, Metadata and Documents that are captured within the Public Health Research Data Management System<\/blockquote>\n<\/td><\/tr>\n<\/table>\n<\/td><\/tr><\/table>\n<p>A copy of the plain language statement for each research project, as required by ethical standards of research, is held within the PHRDM System as a .pdf file. Participant consent agreements are stored as a .pdf file for each project participant within the PHRDM System. Through the security structure of the PHRDM System research participants are deidentified however the system also has the capability to make data reidentifiable (to system administrator roles only) so that reports can be sent to individual participants, participants can be contacted for further involvement in research projects, and also for data linkage purposes. \n<\/p><p>The participant\u2019s consent agreements often have a series of statements relating to particular data \/ information and the participant can choose to consent to the individual statements. These statements often reflect being contacted for further research projects, having the participants data forwarded on to their primary health care clinic etc. These statements are captured with the participants consent within the PHRDM System, so that the agreement between the participant and the project can be maintained during data extraction and reporting. The research projects often have agreements with Communities, Primary Health Care Clinics, hospitals, data custodians etc. Copies of these agreements are held as .pdfs within the PHRDM System for each research project. \n<\/p><p>One of the added features of the PHRDMS is that it also maintains an audit trail and history of all data modifications. The audit trail begins from the time the data has been entered into the system and all modifications to the data are recorded in audit tables which are maintained as part of the system. The audit tables are a log of the change that has been made to the data, at what time and by who. Data that has been manually entered into the database can be corrected through the data entry screens and bulk uploaded data will be backed out of the PHRDM system and then reloaded. \n<\/p><p>All surveys\/ questionnaires that are used within a research project undergo an ethics approval process before they are administered. Sometimes a single survey\/questionnaire will undergo a number of revisions. All versions of the surveys\/questionnaires that have been used within the research project are maintained within the PHRDM System. \n<\/p><p>The PHRDMS stores demographic, vaccinations, diagnosed chronic conditions, medications, lifestyle measures, pathology results, mental health, management plans, allied health and specialist referrals, gestational data and child data. The system allows the system administrator to add clinical variables as needed by the research project, as well as surveys.\n<\/p>\n<h3><span class=\"mw-headline\" id=\"Design\">Design<\/span><\/h3>\n<p>The PHRDMS is a very flexible user friendly system. The data model that underlies the PHRDMS is based on three distinct entities and the relationships between them (Figure 2). This data model allows users to customise their view of the database to the variables that they are collecting for their own research project. Users can therefore add new variables to the participant, community, or Primary Health Care Centre entity. The system also allows new questions and answers from questionnaires to be added. The PHRDMS does not store derived variables, only raw data, which allows the users to classify the data according to individual researcher requirements.\n<\/p><p><a href=\"https:\/\/www.limswiki.org\/index.php\/File:Fig2_vanGanns_eJHI2015_9-1.jpg\" class=\"image wiki-link\" target=\"_blank\" data-key=\"0480598f61136bdda3f1b8d937f18d92\"><img alt=\"Fig2 vanGanns eJHI2015 9-1.jpg\" src=\"https:\/\/www.limswiki.org\/images\/1\/18\/Fig2_vanGanns_eJHI2015_9-1.jpg\" style=\"width: 100%;max-width: 400px;height: auto;\" \/><\/a>\n<\/p>\n<div style=\"clear:both;\"><\/div>\n<table style=\"\">\n<tr>\n<td style=\"vertical-align:top;\">\n<table border=\"0\" cellpadding=\"5\" cellspacing=\"0\" style=\"\">\n\n<tr>\n<td style=\"background-color:white; padding-left:10px; padding-right:10px;\"> <blockquote><b>Figure 2.<\/b> The Entities within the Public Health Research Data Management System<\/blockquote>\n<\/td><\/tr>\n<\/table>\n<\/td><\/tr><\/table>\n<p>The PHRDM System produces a number of standard research reports and individual clinical variables can be extracted into an excel spreadsheet. The system also allows codes to be assigned to data so that it can be used directly within Stata<sup id=\"rdp-ebb-cite_ref-NHMRCAust07_13-1\" class=\"reference\"><a href=\"#cite_note-NHMRCAust07-13\" rel=\"external_link\">[13]<\/a><\/sup> once it has been extracted from the system. The system also produces a log report to capture the history of changes made to the data within the system due to data corrections. All data extracts are recorded within the PHRDMS to maintain a history of what data was extracted by who, at what time, for what purpose. \n<\/p><p>The PHRDM system allows for data linkage to external data sets. Data from external data custodians is able to be linked to the participant, community, primary health care centre, or the participant\u2019s pathology result. The data is initially held in a staging area while it is reviewed against the current set of data variable rules. Any external data that does not match the existing data variable rules is able to be reviewed by the system administrator and either be corrected (in the case of a data error) or rejected from the data upload. The data upload and cleansing process is captured within the PHRDMS to maintain an activity log for administration purposes. \n<\/p><p>Due to the nature of Public Health research many of the projects contained within the PHRDMS collect the same clinical variables and often administer the same questionnaires. The PHRDMS maintains projects separately but with many of the research staff working across numerous projects it is possible for data to be viewed as a total collection (Figure 3), allowing for variables from a number of projects to be reused to answer new research questions.\n<\/p><p><a href=\"https:\/\/www.limswiki.org\/index.php\/File:Fig3_vanGanns_eJHI2015_9-1.jpg\" class=\"image wiki-link\" target=\"_blank\" data-key=\"e5b7c29426d101944e1af79384b03eb6\"><img alt=\"Fig3 vanGanns eJHI2015 9-1.jpg\" src=\"https:\/\/www.limswiki.org\/images\/f\/f7\/Fig3_vanGanns_eJHI2015_9-1.jpg\" style=\"width: 100%;max-width: 400px;height: auto;\" \/><\/a>\n<\/p>\n<div style=\"clear:both;\"><\/div>\n<table style=\"\">\n<tr>\n<td style=\"vertical-align:top;\">\n<table border=\"0\" cellpadding=\"5\" cellspacing=\"0\" style=\"\">\n\n<tr>\n<td style=\"background-color:white; padding-left:10px; padding-right:10px;\"> <blockquote><b>Figure 3.<\/b> The Relationship between projects within the Public Health Research Data Management System<\/blockquote>\n<\/td><\/tr>\n<\/table>\n<\/td><\/tr><\/table>\n<h3><span class=\"mw-headline\" id=\"Access\">Access<\/span><\/h3>\n<p>Initial access to the database is provided through the Australian Access Federation, which will allow researchers into the database, who belong to institutions that are registered with the Australian Access Federation. Therefore allowing researchers access to the system anywhere they are able to get access to the internet. Researchers are then able to be granted access to project data for which they have signed project confidentiality agreements. Access to the project data is then governed by the role that is assigned by the system administrator. The PHRDMS manages data access through the following roles: System Administrator, Researcher, and Data Entry. Functionality within the database is applied to each role with all roles other than system administrator being applied to a specific project.\n<\/p>\n<h2><span class=\"mw-headline\" id=\"Conclusion\">Conclusion<\/span><\/h2>\n<p>The Public Health Data Management System stores and manages a large cohort of Indigenous adults and children, both \u201cwell\u201d and who already have a chronic condition on study enrolment. The dataset will grow due to recruitment of participants over time and increase in scope as new datasets are linked to the cohort. The information generated from the system will be used for the immediate research aims of the Centre of Research Excellence in Prevention of Chronic Conditions and will be able to be used by researchers into the future to answer a much broader range of policy relevant questions, including monitoring incidence of renal, cardiovascular disease, diabetes and mental health problems in different risk groups. This cohort will include these participants at baseline, but also be able to identify incidence of disease in those free of problems at recruitment. \n<\/p><p>The design and development of the Public Health Research Data Management System highlights how it is possible to construct an information system which allows greater access to well preserved public health research data to enable it to be reused and shared. While the development of the PHRDMS has been based on Australian guidelines, the conceptual model under pinning the PHRDMS which is based on the three main entities: participant, community and health service could be used internationally.\n<\/p>\n<h2><span class=\"mw-headline\" id=\"Acknowledgements\">Acknowledgements<\/span><\/h2>\n<p>The research reported in this paper is a project of the Australian Primary Health Care Research Institute, which is supported by a grant from the Commonwealth of Australia as represented by the Department of Health. The information and opinions contained in it do not necessarily reflect the views or policy of the Australian Primary Health Care Research Institute or the Australian Government Department of Health.\n<\/p>\n<h2><span class=\"mw-headline\" id=\"Conflicts_of_interest\">Conflicts of interest<\/span><\/h2>\n<p>None declared.\n<\/p>\n<h2><span class=\"mw-headline\" id=\"Correspondence\">Correspondence<\/span><\/h2>\n<p><b>Dr Deborah van Gaans (Corresponding Author)<\/b><br \/>\nManager: Research Data<br \/>\nCentre for Research Excellence in the Prevention of Chronic Conditions in Rural and Remote Populations<br \/>\nSchool of Population Health, University of South Australia<br \/>\nLevel 8, South Australian Health & Medical Research Institute (SAMHRI)<br \/>\nNorth Terrace, Adelaide, 5001<br \/>\nTel: +618 830 22908<br \/>\ndeborah.vangaans@unisa.edu.au<br \/>\n<\/p><p>Research Associate<br \/>\nDept. of Geography, Environment and Population,<br \/>\nThe University of Adelaide,<br \/>\nNorth Terrace, Adelaide, South Australia, 5005<br \/>\n<\/p><p><b>Dr Katina D\u2019Onise<\/b><br \/>\nSenior Research Fellow<br \/>\nCentre for Research Excellence in the Prevention of Chronic Conditions in Rural and Remote Populations<br \/>\nSchool of Population Health, University of South Australia<br \/>\nLevel 8, South Australian Health & Medical Research Institute (SAMHRI)<br \/>\nNorth Terrace, Adelaide, 5001<br \/>\nTel: +618 830 21221<br \/>\nkatina.d\u2019onise@unisa.edu.au<br \/>\n<\/p><p><b>Mr. Tony Cardone<\/b><br \/>\nBusiness Intelligence Specialist<br \/>\nChancellery,<br \/>\nBusiness Intelligence and Planning, University of South Australia<br \/>\nCity West Campus<br \/>\nNorth Terrace, Adelaide, 5001<br \/>\nTel: +618 830 27286<br \/>\ntony.cardone@unisa.edu.au<br \/>\n<\/p><p><b>Prof Robyn McDermott<\/b><br \/>\nProfessor of Public Health Medicine<br \/>\nCollege of Public Health, Medical and Veterinary Sciences<br \/>\nJames Cook University, PO Box 6811, Cairns QLD<br \/>\n4870 Australia<br \/>\nTel (07) 4232 1575<br \/>\nrobyn.mcdermott@jcu.edu.au<br \/>\n<\/p>\n<h2><span class=\"mw-headline\" id=\"References\">References<\/span><\/h2>\n<div class=\"reflist references-column-width\" style=\"-moz-column-width: 30em; -webkit-column-width: 30em; column-width: 30em; list-style-type: decimal;\">\n<ol class=\"references\">\n<li id=\"cite_note-ThompsonTheQual12-1\"><span class=\"mw-cite-backlink\">\u2191 <sup><a href=\"#cite_ref-ThompsonTheQual12_1-0\" rel=\"external_link\">1.0<\/a><\/sup> <sup><a href=\"#cite_ref-ThompsonTheQual12_1-1\" rel=\"external_link\">1.1<\/a><\/sup><\/span> <span class=\"reference-text\"><span class=\"citation Journal\">Thompson, S.C.; Woods, J.A.; Katzenellenbogen, J.M. 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