January 2017 Supported by a grant from Patient Information Forum Personal Health Records: Learning from voices of experience This guide has been supported www.pifonline.org.uk by a grant from NHS Choices The Patient Information Forum 1 The Patient Information Forum (PIF) is the Please note: This interactive PDF can To find out more about PIF, our work 2 UK membership organisation and network be viewed in a browser but will work and our members go to: for everyone working in, and involved with, best when viewed in Adobe Acrobat. 3 healthcare information and support. www.pifonline.org.uk Download the latest version of Adobe 4 We are committed to improving the [email protected] Acrboat Reader here. healthcare experience of people across the @PiFonline 5 UK. We do this by supporting individuals and patientinformationforum 6 organisations to provide person-centred, high-quality and accessible information, 7 which supports people to understand and 8 make informed decisions about their health, Personal Health Records: learning wellbeing and care choices. from voices of experience 9 PIF is a non-profit, independent organisation Author: Louise Coghlin 10 with members in all healthcare sectors and Editors: Claire Murray and Nicole Naylor 11 in every country in the UK. Published by the Patient Information PIF provides a range of services for its Forum, January 2017 Feedback members and the wider health information Funded by a grant from the National community. These include a weekly email Information Board newsletter, events, guides, query service Appendices and online groups. + Reading Page 2 The Patient Information Forum www.pifonline.org.uk About this guide This guide is for anyone who would like you are using an mHealth app, wearable or opinions of people who care passionately about 1 to find out about Personal Health Records another health-related device making a success of PHRs – people who have (PHRs). This could be if... and you are wondering about how they first-hand experience of developing or using 2 them for personal or professional reasons, or you are keen to live a healthy lifestyle, and might interact with PHRs 3 both – we hope that this guide will give you a stay fit and well you are a health and care professional flavour of how PHRs could impact people’s lives. 4 and you are wondering whether PHRs and you are wondering how PHRs might might help you It builds on information in existing reports such 5 help you to deliver safe and effective care as the Royal College of Physicians’ ‘Personal you have a long-term condition or other 6 you are an NHS or social care manager or Health Record (PHR) Landscape Review’, health need 7 commissioner 2020health.org’s ‘Personal Health Records: and you are wondering whether PHRs Putting patients in control?’, the Nuffield Trust’s and you are looking for information that 8 might help you to understand your own ‘Delivering the Benefits of Digital Health Care’ helps you to plan for, commission and situation, self-manage your care, and and PIF’s 2013 Guide to Health Records Access – 9 implement PHRs. liaise with health and care professionals without unnecessary duplication of content. 10 While researching this guide, it quickly started you would like to help someone else – As we can’t write every section from every to feel as if there are two parallel universes. 11 perhaps a friend or relative – with their perspective, and as we all engage with health health and care One is inhabited by people who know almost from a personal perspective (as well as some Feedback and you are wondering whether PHRs nothing about PHRs and haven’t used them, of us from a professional one), we’ve written can help you to understand that person’s people who seem underwhelmed by PHRs much of the content from the perspective of and uninterested in them. someone who is using their own PHR for their needs and how best you can help Appendices own personal reasons. Another, much smaller, universe is inhabited you create or provide consumer or patient by people who know a great deal about PHRs, We start by exploring what sorts of PHRs are health information and support people who speak passionately about the available and who might want them. Then we and you are wondering whether PHRs can potential benefits of PHRs and the challenges discuss aspects of PHRs that people highlighted + Reading help you to reach patients, carers, service we face in ensuring they work well for as being the most important, concluding with a users and the general public everyone. By exploring the experiences and checklist of key things to consider. Page 3 About this guide www.pifonline.org.uk About this guide Can you help to build ‘With my NHS number as my pin, I’d like to be 1 able to see all my records on my mobile phone, understanding? 2 with seamless integration between primary and This guide provides a snapshot of the secondary care. I’d like to be able to contribute 3 experiences of people who are currently to those records and be in control of them.’ We are very grateful to the National Information Board for the grant 4 using or working with PHRs. When Michael Seres they provided to support our researching the content, we interviewed 5 people on a one-to-one basis, attended development of this guide as part talks at UK eHealth Week (May 2016) ‘Your PHR should be so helpful that it’s as of their ‘Building a Digital Ready 6 prominent in your life as your bank account. Workforce’ Programme. and an event organised by Sitekit, who 7 It should be your Facebook. You should be produce the eRedbook. We also consulted PHRs are an integral part of the looking at it as often as you can.’ 8 publications that people told us were National Information Board’s particularly interesting. Declan Hadley ‘Personalised Health and Care 2020 9 - A Framework for Action’ and of The guide is not, therefore, a 10 comprehensive academic review of PHRs ‘Even your cat is now getting a personal health the resultant action plan and work and we recognise there are experiences record, so get on with it. That’s my message.’ streams. They provide a tangible 11 and views that we have not been able to Adrian Byrne example of how we can all use digital Feedback include. tools to help us improve our health and self-manage our care needs. Please do share information on any ‘It turns out that the only people who know how the whole system works are the patients... research or projects that would add to the Appendices knowledge-base in this resource, via our Only they cross the organisational boundaries, ‘invitation to feedback’, and we will do our a fact that underlines the wisdom and best to include it on the PIF website. importance of efforts to give patients control of their own medical records.’ + Reading Fiona Godlee, writing in the BMJ1 1 Editor’s Choice. Integrated care is what we all want. Fiona Godlee www.bmj.com/content/344/bmj.e3959.full.print Page 4 About this guide www.pifonline.org.uk Acknowledgements We would like to thank everyone who Kevin Cross - Digital Accessibility Lead, Dr Amir Hannan - General Practitioner, contributed their invaluable input and Texthelp Ltd Haughton Thornley Medical Centres; 1 experience to researching and writing this Director, Orbit Healthcare ltd, local GP 2 Dr Pete Davies - Consultant in Diabetes resource, including the following people Federation; Co-Chair Greater Manchester and Endocrinology, Sandwell & West 3 who we interviewed and that we quote in NHS Values Group; Member of the Equality Birmingham Hospitals NHS Trust the guide: Diversity Council, NHS England; Chair West 4 Tim East - Senior Product Manager, Pennine Local Medical Committee; Chair of Dr John Ainsworth - Professor of Health 5 EMIS Health the Association of Greater Manchester LMCs Informatics, The Farr Institute for Health 6 Informatics Research and the University of Bruce Elliott - Type 1 Diabetic, Diabetes Dr Lloyd Humphreys - Vice President of Manchester UK and PPG member, and Senior OD and Business Development, Patients Know Best 7 Learning Manager at NHS Digital Dr Mohammad Al-Ubaydli - Chief Dr Sarah Jefferies FRCP, FRCR PhD - 8 Executive, Patients Know Best Dr Richard Fitton - Retired GP and currently Consultant Clinical Oncologist, 9 Patient Health Literacy and Patient Activator Addenbrooke’s Hospital, Cambridge Ingrid Brindle - Long-term patient, Chair Lead with responsibility for record access 10 of Haughton Thornley Medical Centres’ Dr Phil Koczan - GP and Digital Clinical systems and record accuracy at two Patient Group (Winner of the 2016 award Champion for Patient Online 11 practices in the North West of England for best Patient Group in the UK) Dr Howard Leicester - DeafBlind Feedback Vicky Gardner - Carer Adrian Byrne - Director of Informatics, professional in Health Informatics, recent University Hospital Southampton NHS Lorenzo Gordon - Director, Maldaba Ltd Advisor to RCGP, RCP, NHS England and the Foundation Trust Declan Hadley - Digital Health Lead, Scottish ‘Out of Hours’ review Appendices Peter Cambouropoulos - ICT Programme Lancashire & South Cumbria Change Charles Lowe - Managing Director, Manager, Digital Transformation Programme Digital Health and Care Alliance (DHACA); (South), NHS South, Central and West Immediate Past President, Telemedicine and + Reading Commissioning Support Unit eHealth Section, Royal Society of Medicine Page 5 Acknowledgements www.pifonline.org.uk Acknowledgements Dan Moulin - eRedbook Programme Director, Sitekit 1 Shahid Muhammad - Long-term patient 2 and Scientist, Exeter 3 Richard Pantlin - Freelance expert