Information is pivotal to good-quality care but it has always been difficult for individuals to access information about themselves held by care providers. Fortunately, as healthcare increasingly exists in an online, electronic environment, patients are set to be given more access to their health and social care records. As the first step towards this, the Government has pledged that by 2015 all patients in England should be able to access their GP records online. There are secondary care and mental health access projects happening too.
Opening up access
Most patients able to access their record online will do this through the software company that runs their GP’s computer system. Individuals will be able to log on to, for example: book appointments; request repeat prescriptions; view their GP medical record, including letters, consultations, test results and prescriptions; and update their contact details. Depending on the system being used, the user can access and update their record with varying degrees of control. But the record will not be comprehensive because it will not link to any other healthcare provider. Current UK examples of such systems are EMIS, TPP, PAERS and Renal PatientView.
However, this limited read-only access to individual parts of records, without any joining up between providers, is unlikely to improve outcomes. We must aspire beyond this to shared Personal Health Records (PHRs – see below) to put people in control of their own data. This should form part of a shift towards confident, empowered, informed patients. One of the key principles of the QIPP (Quality, Innovation, Productivity and Prevention) programme for long-term conditions is to transfer power and knowledge to patients to maximize self-management and choice.
What is a shared Personal Health Record?
A shared PHR is a patient-controlled copy of the health information stored about them by health and social care organisations, to which the individual can add their own data – for example, their entire NHS record, which they can annotate and add to, and share. Or it may be a system they subscribe to, where they collect their own information and import all their health records. This type of record offers the potential for patients to share data from one healthcare institution or professional with another, thereby joining up all the data. These types of records are at an early stage of development in the UK, but two providers, Patients Know Best and Microsoft HealthVault, have platforms that can offer them.
Potential benefit to patients
There is a range of potential benefits of personal access to records. A PHR can be helpful in maintaining health and wellness, not just treating illness and how it is used will vary depending on an individual’s needs.
Already some patients are saving time by conducting online transactions such as ordering repeat prescriptions and making appointments. But as access is given to the records themselves, the wider benefits become apparent. PHRs give patients greater access to a wide range of credible health information, data and knowledge. This allows them to:
- achieve a greater understanding of health and illness
- be more involved
- make informed choices and judgements 
- improve their health and manage their conditions.
By seeing advice in ‘black and white’ health messages are reinforced and patients are more likely to make real changes to behaviour – such as their eating habits and activity levels.
Through better sharing of information between primary, secondary and social care, patients may experience more seamless care and be better able to manage the transition between services.
Guide to Personal Health Records: learning from voices of experience
Published in 2017, this guide is for anyone who would like to find out about Personal Health Records (PHRs).
It shares the experiences of people who have first-hand experience of developing or using Personal Health Records.
It starts by exploring what sorts of PHRs are available and who might want them.Then we discuss aspects of PHRs that people highlighted as being the most important, concluding with a checklist of key things to consider.
You can download the guide here: pif-phr-guide-2017-v2
The press release for the guide can be read here: https://www.pifonline.org.uk/learning-voices-experience-personal-health-records/
PIF Guide to Health Records Access
PIF has taken a comprehensive look at what record access means, and the challenges and potential solutions to implementation. This Guide to Health Records Access explores these issues from the perspective of patients and citizens, health and social care professionals and policy makers and commissioners. It includes a wide range of UK and international case studies. You can download the guide here: click here.
The following points are taken from the PiF Guide to Health Records Access.
- Individuals’ access to their health or social care record will offer huge benefits to some. But read-only access to stand-alone records is unlikely to improve outcomes.
- Shared PHRs will help to put people in control of their own data and form part of a shift towards confident, empowered, informed patients.
- Benefits of PHRs can include improved quality of care, safety, effectiveness and patient experience. They can help to maintain health and wellness, not just treat illness, can improve communication, and can make contact with healthcare more efficient.
- Concerns about record access include greater health inequalities, cultural barriers, confidentiality breaches and increased workload and litigation for professionals.
- The value of PHRs will be highest when implemented in the context of:
- Patients playing a far more active role in maintaining and improving their own health
- A move away from paper-based health records towards integrated electronic records, where information is recorded only once, at the point of care
- New technology to reduce and streamline consultations, including telemedicine, and telephone and online consultations
- Electronic transactions, such as appointment booking and repeat prescription requests.
- For shared PHRs to be widely and fully adopted, the following actions are needed:
- The benefits must be clearly articulated to patients and the public.
- The business case for clinicians, providers and commissioners must be clear.
- Baseline evaluation and tracking is needed from the outset.
- Revenue models must be clarified.
- A clear national roadmap is needed on how to achieve this.
Acknowledgement: Emily Newsom-Davis
Page last updated: 26/11/12
 The power of information: putting all of us in control of the health and care information we need. Department of Health, 2012.
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