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Putting patients in the driving seat: personal health records

By ucjubil, on 13 June 2017

By Claire Murray, Joint Head of Operations, the Patient Information Forum

PIF PHR Guide 2017

In January, the Patient Information Forum (PIF) published a new report ‘Personal Health Records: learning from voices of experience’. When we first started researching this report, it felt a bit like we were encountering two parallel but separate universes. The first was inhabited by people who know very little about personal health records and were generally really uninterested in them. A second, much smaller, universe was inhabited by people who know a great deal about personal health records, and who spoke passionately about the benefits of them.

Our report shares the experiences of some of the people using personal health records today, to try start a conversation about how we can make the most of the opportunities personal health records provide to improve our health, and our health services.

How are people using personal health records?

Personal health records (PHRs) are a digital space that enables people to view, record and engage with their health and care information. Already almost everyone in England should be able to access their GP record online. Some people can access their hospital records too. Which parts of your records you can see online, and how well those silos of information have been pulled together, varies depending on where you live.

We spoke to a range of patients, carers, healthcare professionals and developers, about their experiences of using health records. Ingrid Brindle – a long term condition patient in Tameside – says:

‘Using my GP records gives me such a wonderful feeling of control over my stuff. It’s so liberating being able to make appointments, order repeat prescriptions and see test results for myself. You can do all that through your record…’

We also spoke to carers, who explained how proxy access to personal health records has made a real difference. Vicky Gardner, a long-term carer for her husband, said:

‘We’ve found it’s really useful for both of us to have access to my husband’s hospital records…I can keep an eye on what’s going on. At least then, you’re not always trying to track down a doctor.

We spoke to health care professionals who were using PHRs and asked them what they felt the benefits were. Dr Peter Davies, Sandwell and West Birmingham Hospitals NHS Trust, described how using a PHR system with his diabetic patients enables him to make more effective use of consultation time, and said:

‘We’ve found that using PHRs enables us to build closer and more meaningful relationships between patients and professionals.’

Dr Lloyd Humphreys, Patients Knows Best, shared an example from Luton and Dunstable Hospital where PHRs are enabling people with stable inflammatory bowel disease to manage their condition from home. This is anticipated to reduce the number of outpatient appointments required.

PHR Ingrid Brindle quote

What are the potential barriers to using personal health records?

The guide also shares the risks and challenges people articulated around personal health records, and these are summarised as part of checklist at the end of the report.

PHR checklist

These challenges included:

  • Making sure the information is understood – that the record has meaning
  • Ensuring PHR systems are fully accessible
  • Privacy and security, including secure messaging

Why are personal health records important?

At PIF, we know from our conversations with patients, carers and service users that too many people are still not able to access the information and support they need to make informed decisions about their health, wellbeing, care and treatment.

Increasing access to and use of personal health records offers a real opportunity to enable patients to become partners with their health care professionals and play their vital role in ensuring the best possible outcome and experience for them as an individual, whilst supporting the most sustainable use of services.

  • Do you have any experiences to share about using personal health records?
  • How could you contribute to increasing access to and take up of personal health records?
  • And what steps can we take to overcome the potential barriers and challenges associated with an increased use of personal health records?

Our guide is available free to download on the PIF website so please read and share it widely!

The Patient Information Forum (PIF) champions the value of high quality and accessible healthcare information in improving patient experience and outcomes. We provide practical support to help individuals and organisations deliver the best information for their patients and service users.

PIF is an independent, not-for-profit network and membership organisation. Together with our members, we believe that high quality healthcare information and support should be available to everyone.

BIO: Claire Murray has worked at PIF since 2013, and was appointed Joint Head of Operations in October 2014. Whilst at PIF she has led the development and dissemination of best practice guidance for creating health information that works, and managed projects on integrating information into health services, accessible health information, personal health records, quality assurance in health information, and creating health information for children and young people. Previously Claire worked in the field of health information for over 10 years for NAM, an HIV information charity.


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