This Guide is about shared Personal Health Records (PHRs) - an exciting new development with enormous potential to facilitate a step change in the extent to which individuals are involved in managing, and making decisions about, their health.
This guide is aimed at practitioners, managers and patient organisations in health and social care in the UK. It gives a vision for the future of Personal Health Records, and an understanding of some of the challenges and barriers which must be overcome in order to realise their full potential. It points to solutions to these barriers and is, in effect, a call to action.
The Guide brings together the perspectives of policy makers, clinicians, suppliers and patients themselves. Throughout the text, case studies illustrate the current status of records access around the UK and the potential for the future.
Chapter 1 defines PHRs and explains the different levels of access, patient co-production and cross-organisational integration which are possible. It sets PHRs in the context of the development of records access in the UK and the newly launched Information Strategy for England.
Chapter 2 describes the patient and citizen perspective on PHRs. This includes the potential benefits for patients and the public but also some of the risks, such as concerns about safety, and widening health inequalities.
Chapter 3 discusses PHRs from the health and social care professional perspective. It explains some of the concerns about PHRs which have been barriers to their widespread uptake. It counters these with some of the benefits seen when PHRs are implemented in practice.
Chapter 4 describes the benefits of PHRs from the commissioner and health system perspective. It summarises what steps towards records access are included in the new Information Strategy for England, but also highlights important issues still to be tackled by all four UK health systems in order to give PHRs a chance to realise their full potential.
Finally, there is a chapter listing useful resources and organisations, and a glossary of terms.
This Guide is being published at a time when the health records landscape in the UK is changing at a rapid pace. We are keen to hear what you think of it and to learn from you about any areas that we may not have covered or where PiF could usefully do further work.
There is information at the end of the Guide about how to feedback your comments to us or you can use the feedback form.
The Guide was informed by:
- An extensive literature review
- Interviews with clinicians, commissioners and opinion leaders
- An invitation to electronic health record suppliers to contribute case studies
- A focus group with patients and the public held in February 2012
- A policy roundtable event held in March 2012.
Thank you to Microsoft for providing a grant to support the production of the guide.