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      Dynamic Consent: A Possible Solution to Improve Patient Confidence and Trust in How Electronic Patient Records Are Used in Medical Research

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          Abstract

          With one million people treated every 36 hours, routinely collected UK National Health Service (NHS) health data has huge potential for medical research. Advances in data acquisition from electronic patient records (EPRs) means such data are increasingly digital and can be anonymised for research purposes. NHS England’s care.data initiative recently sought to increase the amount and availability of such data. However, controversy and uncertainty following the care.data public awareness campaign led to a delay in rollout, indicating that the success of EPR data for medical research may be threatened by a loss of patient and public trust. The sharing of sensitive health care data can only be done through maintaining such trust in a constantly evolving ethicolegal and political landscape. We propose that a dynamic consent model, whereby patients can electronically control consent through time and receive information about the uses of their data, provides a transparent, flexible, and user-friendly means to maintain public trust. This could leverage the huge potential of the EPR for medical research and, ultimately, patient and societal benefit.

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          Most cited references39

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          Identifying personal genomes by surname inference.

          Sharing sequencing data sets without identifiers has become a common practice in genomics. Here, we report that surnames can be recovered from personal genomes by profiling short tandem repeats on the Y chromosome (Y-STRs) and querying recreational genetic genealogy databases. We show that a combination of a surname with other types of metadata, such as age and state, can be used to triangulate the identity of the target. A key feature of this technique is that it entirely relies on free, publicly accessible Internet resources. We quantitatively analyze the probability of identification for U.S. males. We further demonstrate the feasibility of this technique by tracing back with high probability the identities of multiple participants in public sequencing projects.
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            Finding the missing link for big biomedical data.

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              Patients’ Attitudes Toward Electronic Health Information Exchange: Qualitative Study

              Background In many countries, there has been substantial progress in establishing the electronic transmission of patients’ health information between health care providers, but little is known about how best to engage patients in the process. Objective We explored patients’ views about sharing of electronic health information and their preferences for learning about and participating in this process. Methods Patients in one Massachusetts community in the northeastern United States were recruited to participate in focus-group discussions. Prior to discussion, participants completed a written questionnaire that captured their reactions to draft educational materials and a consent form. The discussion moderator and two physicians analyzed the moderator’s detailed notes from each session and participants’ written comments, using an immersion-crystallization approach. Results Three dominant themes emerged: (1) concerns about privacy and security, (2) the potential benefit to a person’s health, and (3) the desire for more information about the consent process. On the pre-discussion questionnaire, 55 out of 62 participants (88%) indicated that they would provide consent for their information to be shared electronically among their health care providers, given the materials they had reviewed. Conclusions Patients are enthusiastic about electronic health information exchange, recognizing its capacity to improve the quality and safety of health care; however, they are also concerned about its potential to result in breached privacy and misuse of health data. As the exchange of electronic health information becomes more widespread, policy makers will need to ensure that patients have access to concise educational materials and opportunities to engage in conversations about the risks and benefits of participation.
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                Author and article information

                Contributors
                Journal
                JMIR Med Inform
                JMIR Med Inform
                JMI
                JMIR Medical Informatics
                Gunther Eysenbach (JMIR Publications Inc., Toronto, Canada )
                2291-9694
                Jan-Mar 2015
                13 January 2015
                : 3
                : 1
                : e3
                Affiliations
                [1] 1Arthritis Research UK Centre for Epidemiology University of Manchester ManchesterUnited Kingdom
                [2] 2Centre for Primary Care University of Manchester ManchesterUnited Kingdom
                [3] 3HW Communications LancasterUnited Kingdom
                [4] 4Department of Management London School of Economics and Political Science LondonUnited Kingdom
                [5] 5HeLEX - Centre for Health, Law and Emerging Technologies Nuffield Department of Population Health University of Oxford OxfordUnited Kingdom
                [6] 6Health eResearch Centre University of Manchester ManchesterUnited Kingdom
                Author notes
                Corresponding Author: William G Dixon Will.Dixon@ 123456manchester.ac.uk
                Author information
                http://orcid.org/0000-0003-4787-1236
                http://orcid.org/0000-0003-2038-2600
                http://orcid.org/0000-0002-0539-928X
                http://orcid.org/0000-0003-0862-5737
                http://orcid.org/0000-0003-1779-0814
                http://orcid.org/0000-0002-7311-4725
                http://orcid.org/0000-0001-5881-4857
                Article
                v3i1e3
                10.2196/medinform.3525
                4319083
                25586934
                857d900d-5b6c-48dc-baa1-e117543c3156
                ©Hawys Williams, Karen Spencer, Caroline Sanders, David Lund, Edgar A Whitley, Jane Kaye, William G Dixon. Originally published in JMIR Medical Informatics (http://medinform.jmir.org), 13.01.2015.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Medical Informatics, is properly cited. The complete bibliographic information, a link to the original publication on http://medinform.jmir.org/, as well as this copyright and license information must be included.

                History
                : 08 May 2014
                : 17 July 2014
                : 09 September 2014
                : 07 October 2014
                Categories
                Viewpoint
                Viewpoint

                dynamic consent,electronic patient record (epr),medical research,confidentiality,privacy,governance,nhs,data linkage,care.data

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