Factors that influence the translation of an innovation into routine practice arise at the individual, organisational and wider levels of healthcare systems and interact in complex and variable ways [14]. That is why there are clear and distinct ethical, professional, and legal guidelines for the collection and use of data from medical records. 2007. However, a provider may charge for the reasonable costs for copying and mailing the records. Earle, Craig Interviews were conducted with all key staff members. 2009;43:53554. Fiona Stevenson. Sharing medical data for health research: the early personal health record experience. Background: This study aimed to assess the use of medical record items in clinical research in one large academic medical center in Taiwan. J Law Med Ethics. El Emam, Khaled Patients were predominantly female and clustered at the older end of the age spectrum. Please enable it to take advantage of the complete set of features! The use of electronic patient records for medical research: conflicts and contradictions, https://doi.org/10.1186/s12913-015-0783-6, http://ec.europa.eu/justice/data-protection/, http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Documents/2013/the-nhs-constitution-for-england-2013.pdf, http://blog.38degrees.org.uk/2014/11/07/its-time-to-protect-your-medical-records/, http://www.dailymail.co.uk/news/article-2784269/Storm-NHS-gives-ahead-patient-database-despite-concerns-Pilot-scheme-involve-1-7million-people-unless-individual-specifically-ops-out.html, http://www.computing.co.uk/ctg/news/2374495/nhs-england-to-forge-ahead-with-unchanged-caredata-plans, http://creativecommons.org/licenses/by/4.0, http://creativecommons.org/publicdomain/zero/1.0/, bmchealthservicesresearch@biomedcentral.com. For this reason, numeric systems that require an index are sometimes called indirect access systems. Nicolson D. The commodification of patient medical records. To understand the conditions for the use of medical records, the retrospective research using hospital's medical records were analyzed. This was presented by one interviewee as a political hot potato, with another saying it was only possible because the HRSS was a pilot project. In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Following a brief outline of the background to CPRD, normalization process theory (NPT) is used as a framework within which to explore data concerned with downloading electronic patient records from GP practices. Comparative sensitivity of social media data and their acceptable use in research. Thus concerns were expressed about the removal of data from the control of the practice, with a query raised about why the HRSS was necessary if researchers would still have to contact the practice if they wished to directly involve patients in a research project. 2006. Henley, Lesley D An authorization for the use or disclosure of protected health information for a research study may be combined with an authorization for a different research activity, provided that, if research-related treatment is conditioned on the provision of one of the authorizations, such as in the context of a clinical trial, then the compound . Among practice staff, despite commitment to the concept, concerns relating to governance and consent were seen to conflict and present a potential barrier to engagement. Use of a personal email account is never permitted, even for approved research. fill out and maintain accurate and thorough patient records. Epub 2015 Dec 30. Research Credentialingmust be completed and approved prior to access to any UH electronic systems or PHI. There was, however, a lack of commitment to, and engagement with, the HRSS on the part of patients, whilst the commitment of doctors and practice staff was to some extent mitigated by concerns about information governance and consent, focusing in particular on downloading electronic patient records with their associated identifiers. 2012;22:60718. Currently the main primary care database held by CPRD is known as GOLD (formerly GPRD). Accreditation from the NHS or practice was important, as one person put it: Im wary about it, but the fact that it has the its under the auspices of the NHS rather than, if you like, Bloggs whatever; if it was Bloggs whatever I wouldnt do it. Interviews typically lasted for between 20 and 30minutes. The HRSS sought to extract electronic records from across health and social care sectors and to transfer them together with associated identifiers (such as name, address, date of birth) to a designated safe haven (in which information is processed independently of both the data source and the researcher that requires the data). Hammami, Muhammad M This can be taken as a strong indicator of a lack of engagement by patients with the HRSS. In the past, some hospitals have filed records according to patient's names, discharge numbers, or diagnostic code numbers. Kass, Nancy E. FS developed the protocol for the study, oversaw the data collection, conducted the analysis for this paper, drafted and revised the manuscript. Although this work is based on general practices in England, it is likely that the conclusions reached about the problems of balancing the contradictions inherent in sharing what can be perceived as a private resource for the public good are globally transferrable. Verma, Aman Soto CM, Kleinman KP, Simon SR. Quality and correlates of medical record documentation in the ambulatory care setting. The NHS Constitution for England http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Documents/2013/the-nhs-constitution-for-england-2013.pdf. c. Emitter current\ Non-UH personnel, including CWRU employees, must follow UH Research Standard Operating Procedures and complete Research Credentialing to gain access to UH patients PHI. This method of PIM involves comparing identifiable patient attributes (often demographics such as date of birth, gender, name, and address, but sometimes other individually identifiable information) using a logic model that then classifies each pair as a match, a non-match, or a possible match that may require manual review. Views on health information sharing and privacy from primary care practices using electronic medical records. An EHR, or an electronic health record, is a digital version of a person's overall medical history. 216-UH4-KIDS (216-844-5437), For general information: Conclusion: and Obviously it got binned and I dont remember what it said. Abdulhameed, Hunida M Surg Neurol. Buckeridge, David EHR systems are built to share information with other health care providers and organizations - such as laboratories, specialists, medical imaging facilities, pharmacies, emergency facilities, and school and workplace clinics . See UH Policy PH-15, De-identifying Protected Health Information (PHI). Alphabetic filing by patient names is more cumbersome and subject to more error than numerical filing. Interviews typically lasted for about 60minutes. No. We use cookies to distinguish you from other users and to provide you with a better experience on our websites. How do I know whether the project I am considering is research? Neisa, Angelica The .gov means its official. Kramers, Anne L. The key problem here is that the CPRD may be presented as a benign, bureaucratic process but the inherent contradictions that are perceived to exist with centrally held values of information governance and consent remains a barrier to implementation. EHRs contain different types of patient-level variables, such as demographics, diagnoses, problem lists, medications, vital signs, and laboratory data. PMC A patients signed informed consent does not constitute authorization to use or disclose PHI for research purposes. No, such data must only be stored on UH systems and devices. If research participants sign an informed consent document, is this adequate to collect their PHI for research purposes? Even where people stated they understood how they were expected to act they still appeared unclear about the implications of the process. Despite concerns about the quality and quantity of information sent, patients did not present the work involved in participation in the HRSS as particularly burdensome; although reports of not responding in time to opt out meaning records were included without consent indicates this process, in some cases at least, might have been experienced as problematic. Available at. 2016 Mar;87:84-90. doi: 10.1016/j.ijmedinf.2015.12.015. I would also like to acknowledge Paul Higgs for his helpful discussion of an early draft of this paper. Cheng, Ji Authors Nancy E Kass 1 , Marvin R Natowicz, Sara Chandros Hull, Ruth R Faden, Laura Plantinga, Lawrence O Gostin, Julia Slutsman Affiliation Questions were raised about why the whole record was taken instead of just the aspects necessary for particular research projects, with concerns expressed in particular about the lack of explicit consent from patients for downloading their electronic records. The CPRD is partially based on learning from the Health Research Support Service (HRSS), which was used to test the technical and practical aspects of downloading and linking electronic patient records for research. Diagnostics (Basel). Attitudes toward medical and genetic confidentiality in the Saudi research biobank: An exploratory survey. All interviews were analysed thematically with themes independently developed by three researchers and presented and discussed in steering groups meetings. Concerns about balancing privacy against the public good are at the heart of the decision to be involved in any research; arguably a particular problem associated with the use of patient records for research is that there is no direct, visible link between the provision of data and the research for which it is used. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. These concerns were in some ways mitigated by the argument that the quality of UK medical data is generally high: Our worse data is better than most other countries best data. Base current\ Medical records serve important patient interests for present health care and future needs, as well as insurance, employment, and other purposes. government site. BMJ. Total loading time: 0.435 Nothing is really safe: a focus group study on the process of anonymizing and sharing health data for research purposes. GPs did not report any discussion about the HRSS with patients. 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