BMJ Open: first published as 10.1136/bmjopen-2019-029582 on 18 September 2019. Downloaded from BMJ Open is committed to open peer review. As part of this commitment we make the peer review history of every article we publish publicly available. When an article is published we post the peer reviewers’ comments and the authors’ responses online. We also post the versions of the paper that were used during peer review. These are the versions that the peer review comments apply to. The versions of the paper that follow are the versions that were submitted during the peer review process. They are not the versions of record or the final published versions. They should not be cited or distributed as the published version of this manuscript. BMJ Open is an open access journal and the full, final, typeset and author-corrected version of record of the manuscript is available on our site with no access controls, subscription charges or pay-per-view fees (http://bmjopen.bmj.com). If you have any questions on BMJ Open’s open peer review process please email [email protected] http://bmjopen.bmj.com/ on October 1, 2021 by guest. Protected copyright. BMJ Open BMJ Open: first published as 10.1136/bmjopen-2019-029582 on 18 September 2019. Downloaded from From EHR to PHR: Let’s Get the Record Straight Journal: BMJ Open Manuscript ID bmjopen-2019-029582.R1 ArticleFor Type: peerCommunication review article only Date Submitted by the 20-Feb-2019 Author: Complete List of Authors: Symons, Joshua D; Imperial College London, Department of Surgery & Cancer Ashrafian, Hutan; Imperial College London, Department of Surgery & Cancer; Dunscombe, Rachel; Salford Royal NHS Foundation Trust Darzi, Ara; Imperial College London, Institute of Global Health Innovation <b>Primary Subject Patient-centred medicine Heading</b>: Secondary Subject Heading: Public health Patient Health Record, Electronic Health Record, Patient Empowerment, Keywords: Digital, Digital Health http://bmjopen.bmj.com/ on October 1, 2021 by guest. Protected copyright. For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 1 of 9 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2019-029582 on 18 September 2019. Downloaded from 1 2 3 4 From EHR to PHR: Let’s Get the Record Straight 5 6 7 a b c d 8 Joshua Symons , Hutan Ashrafian , Rachel Dunscombe , Ara Darzi 9 a Director, Big Data & Analytical Unit (BDAU), Centre for Health Policy (CHP), Institute of Global Health 10 11 Innovation (IGHI), Imperial College London 12 b 13 Chief Scientific Adviser and Honorary Senior Clinical Fellow in Surgery, Institute of Global Health 14 Innovation (IGHI), Imperial College London 15 c 16 Group Director of ForDigital and peer Chief Information review Officer, Salford only Royal NHS Foundation Trust and 17 Northern Care Alliance 18 d 19 Director, Institute of Global Health Innovation (IGHI), Imperial College London 20 21 22 Corresponding author - Joshua Symons ([email protected]) 23 24 10th Floor QEQM (Queen Elizabeth the Queen Mother) Building 25 26 Room 1069 27 28 St Mary’s Hospital Campus 29 30 Imperial Health Care NHS Trust 31 32 Praed Street, W2 1NY 33 34 London, UK http://bmjopen.bmj.com/ 35 36 37 38 39 40 41 42 on October 1, 2021 by guest. Protected copyright. 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 2 of 9 BMJ Open: first published as 10.1136/bmjopen-2019-029582 on 18 September 2019. Downloaded from 1 2 3 Abstract 4 5 The importance of implementing integrated electronic health records as a route to enhance the quality 6 of health delivery has been increasingly understood. Electronic health records however carry several 7 8 limitations that include major fragmentation through multiple providers and protocols throughout the 9 NHS. Analysing the digital healthcare landscape, we identify that adopting a patient health record 10 system can empower patients and allow better harmonisation of clinical data at a national level. We 11 propose regional patient health record hubs to provide a universal interface that integrates digital heath 12 data at a regional level. This will reduce the complexity of connections, decrease governance challenges 13 14 and interoperability issues while also providing a safe platform for high-quality scalable and sustainable 15 digital solutions, including AI, across the NHS. 16 For peer review only 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 http://bmjopen.bmj.com/ 35 36 37 38 39 40 41 42 on October 1, 2021 by guest. Protected copyright. 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 3 of 9 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2019-029582 on 18 September 2019. Downloaded from 1 2 3 The importance of implementing integrated electronic health records (EHR) as a route to enhance the 4 quality of health delivery were outlined as early as 1998. The benefits of universal access for patients, 5 6 clinicians, policy makers and administrators include (i) increasing confidence and convenience through 7 streamlined access to information, (ii) improving clinical outcomes through enhanced care 8 communication, (iii) better decision making through access to real-time evidence and (iv) enabling 9 planning and productivity gains through increased efficiency.1 In 2014, it was proposed that by March of 10 2 11 2018, all individuals should have both viewing and editing capabilities for their own health record. This 12 proposal aligns with the recent definition of a personal health record (PHR) by the Royal College of 13 Physicians as “digital tools that allow a citizen to interact with health and social care services, have 14 access to the clinical content in their record, capture, record and if they wish, share their own data with 15 clinicians and others”.3 PHRs therefore provide an integral part of health record integration that is not 16 For peer review only 17 currently provided by EHR systems alone. Furthermore, PHRs have been shown to contribute to health 18 awareness and could be key in empowering patients to take direct control of their own healthcare.4 19 However, despite widespread availability of multiple PHR solutions in the UK, 2018 is now passing 20 without substantial adoption and patients able to meaningfully interact with their own healthcare data. 21 22 Although there has been growth in the number of PHR providers in almost all regions of the UK, PHR 23 uptake by patients and organisations is still remarkably slow.5 In response to a survey in 2016, less than 24 500,000 people were individually registered users of PHR while 1,377 organisations, including 122 NHS 25 26 Trusts, 16 Clinical Commissioning Groups (CCGs), 1,184 General Practice Surgeries (GPs), 33+ local 27 authorities, 15+ social care providers and 7 health boards were listed as organisational users of PHR.6 28 However, it is not clear if single organisations have integrated with multiple PHR providers thereby 29 conflating the totals and making them appear larger than they are, such as indicating that nearly half of 30 all NHS Trusts are organisational users.6 Slow uptake has been attributed to barriers in (i) governance 31 6 32 approval, (ii) clinical engagement, (iii) patient awareness and (iv) integration with local sytems. 33 Challenges in governance are being overcome by legislation changes informed by recent Caldicott 34 reports.6 Some existing PHR systems give patients choice over sharing of their data addressing some of http://bmjopen.bmj.com/ 35 the governance concerns. Clinician and patient experience has been investigated to determine personal 36 3 37 barriers to PHR adoption. However, PHR integration with local systems, or PHR interoperability, 38 remains an unexplored challenge. Despite a large amount of research in EHR interoperability, there is a 39 paucity of evidence regarding barriers for EHR integration with PHR. The prospect of universally 40 connecting PHR systems is daunting considering individual CCGs, NHS Trusts, GPs, PHR and EHR vendors 41 and exchange protocols (Table 1 and Figure 1). Established node connection formulae demonstrates 42 on October 1, 2021 by guest. Protected copyright. 43 that just over 8,500 organisations could require over 36 million individual connections to provide real- 44 time connectivity of records for patients at any location.7 8 This doesn’t take into account additional 45 organisations such as laboratories, social and community care. Further addition of PHR providers, 46 personal devices and applications will exponentially increase this complexity. Solutions have been 47 proposed to deal with some of this complexity as part of national programmes but these fall short of 48 49 implementing the benefits of PHR. 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 4 of 9 BMJ Open: first published as 10.1136/bmjopen-2019-029582 on 18 September 2019. Downloaded from 1 2 3 Type Count 4 Care organisations (207) CCGs 5 6 (152) acute specialist and non-specialists trusts 7 (54) mental health trusts 8 (35) community providers 9 (10) ambulance trusts 10 (853) for-profit and not-for-profit independent sector organisations 11 (7,148) GPs 12 PHR providers (29) independent providers recorded by RCP 13 14 GP EHR providers (4) EMIS, TPP, INPS, Microtest 15 Trust EHR providers (7) Allscripts, Cerner, Epic, Intersystems, Lorenzo, Meditech, OpenEHR 16 Exchange protocols For(6) HL7, peerFHIR, IHE, CDA, review XDS, DICOM only 17 18 Table 1 Examples of different care providers, PHR and EHR providers and exchange protocols used within the UK.