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Personal Health Record (PHR) User Insights

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Personal Health Record (PHR) User Insights Health Informatics Unit Personal health record (PHR) User insights Final report January 2017 Health Informatics Unit Personal health record (PHR) User insights Final report January 2017 Prepared by Jeremy Wyatt, Jan Hoogewerf, Nicola Quinn, John Williams, Clare Clement, Harold Thimbleby, Shiva Sathanandam and Paul Rastall on behalf of the Health Informatics Unit. The Royal College of Physicians The Royal College of Physicians (RCP) plays a leading role in the delivery of high-quality patient care by setting standards of medical practice and promoting clinical excellence. We provide physicians in over 30 medical specialties with education, training and support throughout their careers. As an independent charity representing more than 30,000 fellows and members worldwide, we advise and work with government, patients, allied healthcare professionals and the public to improve health and healthcare. NHS England NHS England exists to create the culture and conditions for health and care services and staff to deliver the highest standard of care and ensure that valuable public resources are used effectively to get the best outcomes for individuals, communities and society for now and for future generations. NHS England empowers and supports clinical leaders at every level of the NHS to make genuinely informed decisions. Central to their ambition is to place patients and the public at the heart of everything they do. NHS Digital NHS Digital is the trusted national provider of high-quality information, data and IT systems for health and social care. NHS Digital collects, analyses and publishes national data and statistical information as well as delivering national IT systems and services to support the health and care system. The information services and products are used extensively by a range of organisations to support the commissioning and delivery of health and care services, and to provide information and statistics that are used to inform decision-making and choice. The Health Informatics Unit The RCP Health Informatics Unit (HIU) aims to improve patient care. It provides clinical leadership for the development and implementation of standards for the structure and content of care records to achieve interoperability between computer systems in different care settings. The HIU advises on and promotes the implementation and use of safe and effective new technologies and it promotes the professionalisation of clinical informatics and the development of career pathways for those wanting to specialise in this field. Citation for this document: Wyatt J, Hoogewerf J, Quinn N et al. Personal health record user insights: final report. London: Royal College of Physicians, 2017. Copyright All rights reserved. No part of this publication may be reproduced in any form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner. Applications for the copyright owner's written permission to reproduce any part of this publication should be addressed to the publisher. Copyright © Royal College of Physicians 2017 ISBN 978-1-86016-674-7 eISBN 978-1-86016-675-4 Royal College of Physicians 11 St Andrews Place Regent’s Park London NW1 4LE www.rcplondon.ac.uk Registered charity no 210508 Personal health record user insights: final report Acknowledgements First and foremost, we would like to thank everyone who gave their time and shared their experiences during the interviews and focus groups that informed this report. These insights are yours. In addition, we would like to thank those who shared their experiences of developing and implementing personal health and care records, in particular Rix Research and Media, the University of East London and the University Hospital Southampton NHS Foundation Trust. Finally, we would like to thank NHS England for commissioning and supporting the development of this work, and NHS Digital for facilitating the publication of this report. © Royal College of Physicians 2017 3 Personal health record user insights: final report Contents 1 Executive summary ......................................................................................................................... 6 1.1 Definition of a PHR .................................................................................................................. 6 1.2 Summary of findings ............................................................................................................... 7 1.3 Summary of conclusions ......................................................................................................... 9 1.4 Summary of recommendations ............................................................................................ 10 1.5 Recommendations for future research ................................................................................. 10 2 Introduction .................................................................................................................................. 11 2.1 Overview ............................................................................................................................... 11 2.2 Background and rationale ..................................................................................................... 11 2.3 Aims of the project................................................................................................................ 12 2.4 Desired outcomes ................................................................................................................. 12 2.5 Objectives of the project ....................................................................................................... 12 2.6 The definition of ‘personal health record’ ............................................................................ 13 2.7 Structure of the report .......................................................................................................... 13 3 Methodology ................................................................................................................................. 14 3.1 Research design .................................................................................................................... 14 3.2 Sampling ................................................................................................................................ 14 3.3 Research process .................................................................................................................. 14 3.4 Analysis ................................................................................................................................. 15 3.5 Development of user journeys.............................................................................................. 16 3.6 Literature review ................................................................................................................... 16 4 Findings from empirical research.................................................................................................. 17 4.1 Description of study participants .......................................................................................... 18 4.2 Service users’ motivations to adopt a PHR ........................................................................... 19 4.3 Factors that influence a decision to adopt a PHR ................................................................. 21 4.4 Barriers to adopting a PHR .................................................................................................... 22 4.5 Benefits of using a PHR ......................................................................................................... 24 4.6 Interaction of the patient journey and PHR use ................................................................... 27 4.7 Unmet needs and negative experiences of PHRs ................................................................. 29 4.8 Support required for adoption and ongoing use of a PHR ................................................... 31 4.9 User journeys ........................................................................................................................ 32 5 Literature review ........................................................................................................................... 39 5.1 Benefits of having a PHR ....................................................................................................... 39 5.2 Factors that influence PHR adoption and use....................................................................... 39 5.3 Barriers to adopting a PHR and negative experiences .......................................................... 40 6 Conclusions and recommendations .............................................................................................. 41 4 © Royal College of Physicians 2017 Personal health record user insights: final report 7 Recommendations for future research ......................................................................................... 43 8 Appendices .................................................................................................................................... 45 8.1 Description of ‘PHR’ circulated during primary data collection ........................................... 45 8.2 Primary data collection complete findings ..........................................................................
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