Open access Communication 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 Joshua D Symons,1 Hutan Ashrafian, 1 Rachel Dunscombe,2 Ara Darzi1 To cite: Symons JD, ABSTRACT personal health record (PHR) by the Royal Ashrafian H, Dunscombe R, This article reflects on the changing nature of health College of Physicians as ‘digital tools that . From EHR to PHR: let’s get et al information access and the transition of focus from allow a citizen to interact with health and the record straight. BMJ Open electronic health records (EHRs) to personal health records 2019;9:e029582. doi:10.1136/ social care services, have access to the clinical (PHRs) along with the challenges and need for alignment of bmjopen-2019-029582 content in their record, capture, record and national initiatives for EHR and PHR in the National Health if they wish, share their own data with clini- ► Prepublication history for Service (NHS) of the UK. The importance of implementing 3 this paper is available online. integrated EHRs as a route to enhance the quality of cians and others’. PHRs therefore provide To view these files, please visit health delivery has been increasingly understood. EHRs, an integral part of health record integration the journal online (http:// dx. doi. however, carry several limitations that include major that is not currently provided by EHR systems org/ 10. 1136/ bmjopen- 2019- fragmentation through multiple providers and protocols alone. Furthermore, PHRs have been shown 029582). throughout the NHS. Questions over ownership and to contribute to health awareness and could Received 31 January 2019 control of data further complicate the potential for fully be key in empowering patients to take direct Revised 12 August 2019 utilising records. Analysing the previous initiatives and control of their own healthcare.4 However, Accepted 14 August 2019 the current landscape, we identify that adopting a patient despite the widespread availability of multiple health record system can empower patients and allow PHR solutions in the UK, 2018 has now better harmonisation of clinical data at a national level. passed without substantial adoption of PHRs We propose regional PHR ‘hubs’ to provide a universal and empowerment of patients through mean- interface that integrates digital health data at a regional level with further integration at a national level. We ingful interaction with their own healthcare propose that these PHR hubs will reduce the complexity data. of connections, decrease governance challenges and Although there has been growth in the interoperability issues while also providing a safe platform number of PHR providers in almost all for high-quality scalable and sustainable digital solutions, regions of the UK, PHR uptake by patients including artificial intelligence across the UK NHS, serving 5 and organisations is still remarkably slow. In http://bmjopen.bmj.com/ as an exemplar for other countries which wish to realise response to a survey in 2016, less than 500 000 the full value of healthcare records. people were individually registered users of PHR while 1377 organisations, including 122 NHS Trusts, 16 Clinical Commissioning BACKGROUND Groups (CCGs), 1184 general practice The importance of implementing integrated surgeries (GPs), 33+ local authorities, 15+ electronic health record (EHR), increasingly social care providers and 7 health boards 6 referred to as electronic patient records were listed as organisational users of PHR. on September 29, 2021 by guest. Protected copyright. (EPRs), as a route to enhance the quality of However, it is not clear if single organisa- health delivery in the UK National Health tions have integrated with multiple PHR Service (NHS) were outlined as early as 1998.1 providers thereby conflating the totals and The benefits of universal access for patients, making them appear larger than they are, for clinicians, researchers, policymakers and example, counts reflecting that nearly half of administrators include (1) increasing confi- all NHS Trusts are organisational users.6 Slow © Author(s) (or their dence and convenience through streamlined uptake has been attributed to barriers in (1) employer(s)) 2019. Re-use access to information, (2) improving clinical sharing of data at a local level, (2) clinical permitted under CC BY. Published by BMJ. outcomes through enhanced care commu- aversion and reluctance, (3) patient aware- 1 nication, (3) better science and decision ness and (4) technical integration with local Institute of Global Health 6 Innovation, Imperial College making through access to real-time evidence information systems. Despite improvements London, London, UK and (4) enabling planning and productivity in data sharing mandates, namely through 2Salford Royal NHS Foundation gains through increased efficiency.1 In 2014, the Caldicott principles, the first challenge Trust, Salford, UK it was proposed that by March of 2018, all indi- remains heavily influenced by the second and Correspondence to viduals should have both viewing and editing third challenges as sharing of data is inhibited 2 Mr Joshua D Symons; capabilities for their own health record. where there is a lack of clinician and patient j. symons@ imperial. ac. uk This proposal aligns with the definition of a endorsement.6 Furthermore, PHR solutions Symons JD, et al. BMJ Open 2019;9:e029582. doi:10.1136/bmjopen-2019-029582 1 Open access BMJ Open: first published as 10.1136/bmjopen-2019-029582 on 18 September 2019. Downloaded from Table 1 Examples of different care providers, PHR and for EHR integration with PHR, that is, PHR interop- EHR providers and exchange protocols used within the UK. erability. The prospect of universally connecting PHR systems is daunting considering the sheer number Type Count of individual CCGs, NHS Trusts, GPs, PHR and EHR Care organisations 1. (207) CCGs vendors and exchange protocols (table 1 and figure 1). 2. (152) Acute specialist and non- Established node connection formulae demonstrate specialists trusts that 8500 organisations could require over 36 million 3. (54) Mental health trusts individual connections to provide real-time connectivity 4. (35) Community providers of records for patients at any location.7 8 This does not 5. (10) Ambulance trusts 6. (853) For-profit and not-for-profit take into account additional organisations such as labo- independent sector organisations ratories, social and community care. Further addition (7148) GPs of PHR providers, personal devices and applications will PHR providers (29) Independent providers recorded exponentially increase this complexity. Solutions have by RCP been proposed to deal with some of this complexity as part of national programmes but these fall short of imple- GP EHR providers (4) EMIS, TPP, INPS and Microtest menting the benefits of PHR. Therefore, both technical Trust EHR providers (7) Allscripts, Cerner, Epic, and socio-technical barriers for information exchange Intersystems, Lorenzo, Meditech between health record systems continue to present the and OpenEHR biggest barrier for enabling these benefits. Exchange protocols (6) HL7, FHIR, IHE, CDA, XDS and DICOM The list is non-exhaustive. REDUCING BARRIERS FOR INFORMATION EXCHANGE CCG, Clinical Commissioning Group; EHR, electronic health record; GP, general practice surgeries; PHR, personal health Local Health and Care Record Exemplars (LHCREs) have record. been created in the NHS with the same proposed benefits outlined in 1998 through integration of care records, such as primary care with secondary, mental health and social have the ability to address the first three challenges at a regional level.9 Although LHCREs aim to achieve through patient control of records and bringing value real-time data sharing of both identifiable and de-person- for clinicians and patients yet this ability is hampered alised data for direct care, the scope of these integrated by the formidable challenge of local integration. Given records does not universally include provision of linked that the majority of existing UK PHR solutions are reliant data for research or patient access to read and write to on direct integration with existing EHR solutions, local integrated records.9 Approaches to governance of data information exchange remains a key inhibitor to gaining in LHCRE are not universal, with some initiatives putting http://bmjopen.bmj.com/ value from PHRs.6 control of research and sharing permission with GPs and Despite a large amount of research in EHR interoper- Academic Health Science Networks while others form ability, there is a paucity of evidence regarding barriers independent research advisory groups. Some LHCREs on September 29, 2021 by guest. Protected copyright. Figure 1 PHR hubs would transform the complex ecosystem (left) including high patient and provider burden to a simpler ecosystem (right) centred around the patient increasing choice and system flexibility. CCG, ClinicalCommissioning Group; EHR, electronichealth record; GP, generalpractice surgeries; PHR, personal health record. 2 Symons JD, et al. BMJ Open 2019;9:e029582. doi:10.1136/bmjopen-2019-029582 Open access BMJ Open: first published as 10.1136/bmjopen-2019-029582 on 18 September 2019. Downloaded from are implementing PHR repositories at a regional level but any ability to edit or even view the entire patient record. this is not universal and different LHCREs are embracing Other features will allow patients to interact with portions different