Five key strategic priorities of integrating patient generated health data into United Kingdom electronic health records

Kathrin Cresswell, Brian McKinstry, Maria Wolters, Anoop Shah, Aziz Sheikh

Abstract


The integration of patient/person generated health data into clinical applications is a key strategic priority internationally. However, despite agreement on the overall direction of travel, there are still a range of challenges that inhibit progress in this area. These include technology-related factors (such as interoperability), use-related factors (such as data overload) and characteristics of the strategic environment (such as existing standards). Building on important policy deliberations from the United States that aim to navigate these challenges, we here apply emerging policy frameworks to the United Kingdom and outline five key priority areas that are intended to help policy makers make important strategic decisions in attempting to integrate patient/person generated data into electronic health records.


Keywords


patient/person generated health data; wearables; apps; strategy; electronic health records

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References


Black AD, Car J, Pagliari C, Anandan C, Cresswell K, Bokun T, et al. The impact of eHealth on the quality and safety of health care: a systematic overview. PLoS Medicine 2011;8(1):e1000387. https://doi.org/10.1371/journal.pmed.1000387. PMid:21267058; PMCid:PMC3022523.

HIMSS Industry Briefing. Value of Patient-Generated Health Data (PGHD). Available from: www.himss.org/file/1262901/download?token=HlA_Zgb1. Accessed 12 April 2018.

McDermott MM, Spring B, Berger JS, Treat-Jacobson D, Conte MS, Creager MA, et al. Effect of a home-based exercise intervention of wearable technology and telephone coaching on walking performance in peripheral artery disease—the HONOR randomized clinical trial. JAMA 2018;319(16):1665–76. https://doi.org/10.1001/jama.2018.3275. PMid:29710165; PMCid:PMC5933394.

Finkelstein EA, Haaland BA, Bilger M, Sahasranaman A, Sloan RA, Nang EE, et al. Effectiveness of activity trackers with and without incentives to increase physical activity (TRIPPA): a randomised controlled trial. The Lancet Diabetes & Endocrinology 2016;4(12):983–95. https://doi.org/10.1016/S2213-8587(16)30284-4.

Official Website of The Office of the National Coordinator for Health Information Technology (ONC). Push Patient-Generated Health Data into Integrated EHR. Available from: https://www.healthit.gov/isa/push-patient-generated-health-data-integrated-ehr. Accessed 12 April 2018.

Scottland’s Digital Health and Care Strategy. Available from: http://www.gov.scot/Resource/0053/00534657.pdf?utm_source=Health+Care+Roundup&utm_campaign=a9d4e6f982-EMAIL_CAMPAIGN_2018_04_27&utm_medium=email&utm_term=0_78e7587464-a9d4e6f982-121726557. Accessed 1 May 2018.

Wild SH, Hanley J, Lewis SC, McKnight JA, McCloughan LB, Padfield PL, et al. Supported telemonitoring and glycemic control in people with type 2 diabetes: the Telescot diabetes pragmatic multicenter randomized controlled trial. PLoS Medicine 2016;13(7):e1002098. https://doi.org/10.1371/journal.pmed.1002098. PMid:27458809; PMCid:PMC4961438.

Hui CY, Walton R, McKinstry B, Jackson T, Parker R, Pinnock H. The use of mobile applications to support self-management for people with asthma: a systematic review of controlled studies to identify features associated with clinical effectiveness and adherence. Journal of the American Medical Informatics Association 2016;24(3):619–32. https://doi.org/10.1093/jamia/ocw143.

Bloomfield Jr RA, Polo-Wood F, Mandel JC, Mandl KD. Opening the Duke electronic health record to apps: implementing SMART on FHIR. International Journal of Medical Informatics 2017;99:1–10. https://doi.org/10.1016/j.ijmedinf.2016.12.005. PMid:28118917.

Mobi Health News. NHS healthcare organization Salford Royal taps Validic to integrate patient-generated health data into EHR. Available from: http://www.mobihealthnews.com/content/nhs-healthcare-organization-salford-royal-taps-validic-integrate-patient-generated-health. Accessed 12 April 2018.

Paterson M, McAulay A, McKinstry B. Integrating third-party telehealth records with the general practice electronic medical record system: a solution. Journal of Innovation in Health Informatics 2017;24(4):317–22. https://doi.org/10.14236/jhi.v24i4.915. PMid:29334351.

Making IT work: harnessing the power of health information technology to improve care in England. Available from: https://www.gov.uk/government/publications/using-information-technology-to-improve-the-nhs/making-it-work-harnessing-the-power-of-health-information-technology-to-improve-care-in-england. Accessed 29 April 2018.

Health Data Research UK (HDR UK). Available from: https://hdruk.ac.uk/. Accessed 29 April 2018.

Hunt to Promise Every NHS Patient App Access to Records. Available from https://www.digitalhealth.net/2017/09/hunt-promise-every-nhs-patient-app-access-records/. Accessed 29 April 2018.

Accenture Federal Services. Conceptualizing a Data Infrastructure for the Capture, Use, and Sharing of Patient-Generated Health Data in Care Delivery and Research through 2024. Available from: https://www.healthit.gov/sites/default/files/Draft_White_Paper_PGHD_Policy_Framework.pdf. Accessed 12 April 2018.

AMIA Policy Invitational. Redefining Our Picture of Health: Towards a Person-Centered Integrated Care, Research, Wellness, and Community Ecosystem. Available from: https://www.amia.org/sites/default/files/API-2017-White-Paper-Redefining-our-Picture-of-Health.pdf. Accessed 12 April 2018.

Hanseth O, Monteiro E. Inscribing behaviour in information infrastructure standards. Accounting, Management and Information Technologies 1997;7(4):183–211. https://doi.org/10.1016/S0959-8022(97)00008-8.

NHS England. Apps Library is Advance for a Digital NHS. Available from: https://www.england.nhs.uk/blog/apps-library-is-advance-for-a-digital-nhs/. Accessed 12 April 2018.

Sittig DF, Wright A. What makes an EHR “open” or interoperable? Journal of the American Medical Informatics Association 2015;22(5):1099–101. https://doi.org/10.1093/jamia/ocv060. PMid:26078411.

Mandel JC, Kreda DA, Mandl KD, Kohane IS, Ramoni RB. SMART on FHIR: a standards-based, interoperable apps platform for electronic health records. Journal of the American Medical Informatics Association 2016;23(5):899–908. https://doi.org/10.1093/jamia/ocv189. PMid:26911829; PMCid:PMC4997036.

NHS Digital. NHS Digital Launches New API Lab. Available from: https://digital.nhs.uk/article/7927/NHS-Digital-launches-new-API-Lab. Accessed 12 April 2018.

SMART: Tech Stack for Health Apps. Available from: http://docs.smarthealthit.org/. Accessed 12 April 2018.

Thomson Reuters Practical Law. Medicinal product regulation and product liability in UK (England and Wales): overview. Available from: https://uk.practicallaw.thomsonreuters.com/3-500-9763?transitionType=Default&contextData=(sc.Default)&firstPage=true&bhcp=1. Accessed 12 April 2018.

GOV.UK. Medical Devices: Software Applications (apps). Available from: https://www.gov.uk/government/publications/medical-devices-software-applications-apps. Accessed 12 April 2018.

Yang YT, Silverman RD. Mobile health applications: the patchwork of legal and liability issues suggests strategies to improve oversight. Health Affairs 2014;33(2):222–7. https://doi.org/10.1377/hlthaff.2013.0958. PMid:24493764.

EUGDPR. GDPR Portal: Site Overview. Available from: https://www.eugdpr.org/. Accessed 12 April 2018.

Mello MM, Adler-Milstein JU, Ding KL, Savage L. Legal barriers to the growth of health information exchange—boulders or pebbles? The Milbank Quarterly 2018;96(1):110–43. https://doi.org/10.1111/1468-0009.12313. PMid:29504197.

Stoyanov SR, Hides L, Kavanagh DJ, Zelenko O, Tjondronegoro D, Mani M. Mobile app rating scale: a new tool for assessing the quality of health mobile apps. JMIR Mhealth and Uhealth 2015;3(1):e27. https://doi.org/10.2196/mhealth.3422

Piwek L, Ellis DA, Andrews S, Joinson A. The rise of consumer health wearables: promises and barriers. PLoS Medicine 2016;13(2):e1001953. https://doi.org/10.1371/journal.pmed.1001953. PMid:26836780; PMCid:PMC4737495.

NHS Digital. Patient Reported Outcome Measures (PROMs). Available from: https://digital.nhs.uk/patient-reported-outcome-measures. Accessed 12 April 2018.

Wu Y, Yao X, Vespasiani G, Nicolucci A, Dong Y, Kwong J, et al. Mobile app-based interventions to support diabetes self-management: a systematic review of randomized controlled trials to identify functions associated with glycemic efficacy. JMIR Mhealth and Uhealth 2017;5(3):e35. https://doi.org/10.2196/mhealth.6522.

Cresswell KM, Sheikh A. Undertaking sociotechnical evaluations of health information technologies. Journal of Innovation in Health Informatics 2014;21(2):78–83. https://doi.org/10.14236/jhi.v21i2.54. PMid:24841408.

Mendiola MF, Kalnicki M, Lindenauer S. Valuable features in mobile health apps for patients and consumers: content analysis of apps and user ratings. JMIR Mhealth and Uhealth 2015;3(2):e40. https://doi.org/10.2196/mhealth.4283. PMid:25972309; PMCid:PMC4446515.

Cresswell K, Cunningham-Burley S, Sheikh A. Creating a climate that catalyses healthcare innovation in the United Kingdom–learning lessons from international innovators. Journal of Innovation in Health Informatics 2017;23(4):772–82. https://doi.org/10.14236/jhi.v23i4.882. PMid:28346133.

Cresswell KM, Mozaffar H, Lee L, Williams R, Sheikh A. Workarounds to hospital electronic prescribing systems: a qualitative study in English hospitals. BMJ Quality & Safety 2016;bmjqs-2015.

Cresswell KM, Worth A, Sheikh A. Integration of a nationally procured electronic health record system into user work practices. BMC Medical Informatics and Decision Making 2012;12(1):15. https://doi.org/10.1186/1472-6947-12-15. PMid:22400978; PMCid:PMC3313868.

Hennington A, Janz BD. Information systems and healthcare XVI: physician adoption of electronic medical records: applying the UTAUT model in a healthcare context. Communications of the Association for Information Systems 2007;19(1):5.

Mishuris RG, Yoder J, Wilson D, Mann D. Integrating data from an online diabetes prevention program into an electronic health record and clinical workflow, a design phase usability study. BMC Medical Informatics and Decision Making 2016;16(1):88. https://doi.org/10.1186/s12911-016-0328-x. PMid:27401606; PMCid:PMC4940704.

Ash JS, Berg M, Coiera E. Some unintended consequences of information technology in health care: the nature of patient care information system-related errors. Journal of the American Medical Informatics Association 2004;11(2):104–12. https://doi.org/10.1197/jamia.M1471. PMid:14633936; PMCid:PMC353015.

Cohen DJ, Keller SR, Hayes GR, Dorr DA, Ash JS, Sittig DF. Integrating patient-generated health data into clinical care settings or clinical decision-making: lessons learned from project healthdesign. JMIR Human Factors 2016;3(2):e26.

Sittig DF, Wright A, Osheroff JA, Middleton B, Teich JM, Ash JS, et al. Grand challenges in clinical decision support. Journal of Biomedical Informatics 2008;41(2):387–92. https://doi.org/10.1016/j.jbi.2007.09.003. PMid:18029232; PMCid:PMC2660274.




DOI: http://dx.doi.org/10.14236/jhi.v25i4.1068

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