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26.09.18

Personal Health Records: Empowering people

Source: NHE Sept/Oct 2018

Stewart Fishman, product manager for Personal Health Records (PHRs) at NHS Digital, discusses the empowering impact PHRs can have for patients.

Imagine a future where people can easily choose from a range of secure, usable, online tools to access their care records. They can add information to these tools and share it with anyone involved in their care.

It’s not too much of a leap, because these tools are available in the health and care system already. They’re known as PHRs, and offer people the ability to take greater control of their health and care.

The challenge for patients and the public is that being able to access a PHR that meets your needs depends on a wide range of factors, including where you live and what your health needs are.

The aim of NHS Digital’s PHR programme is to enable anyone who wants a PHR to have one, by supporting their adoption and development by health and care organisations throughout England.

How we can help

To achieve this aim, we had to understand how we could help. In late 2017, we ran discovery research to find out the challenges to wider adoption of PHRs. We reviewed the literature and existing research and spoke directly to NHS trusts with and without PHRs in place. We also spoke to social care organisations, suppliers of PHR systems, and heard passionate views from patients and health and care professionals.

We learnt early on that most people gained access to a PHR as a patient through their clinician. Most of the time, they were a patient with a long-term condition. 

We decided that the best way we could increase the number of people using PHRs was to help make it easier for local NHS organisations to build or buy them. At the same time, we had to ensure the PHRs being developed supported patient-centred care and were truly interoperable.

A recurrent theme during discovery was that people implementing PHRs felt isolated. They wanted to be able to share information, but in particular they wanted it to become easier to:

  • Understand what a PHR is and what steps you can take to adopt one;
  • Find out who else is developing PHRs;
  • Find examples of good practice;
  • Speed up key processes such as procurement and information governance;
  • Feel confident they are meeting existing standards;
  • Make progress in line with a ‘vision’ for PHRs in England;
  • Find evidence for PHR benefits.

The PHR Adoption Toolkit

Everything we do is based on meeting these user needs. We have started what we hope will become a key resource for personal health records development.

We are calling this a ‘toolkit’ as we want it to hold a wide range of useful resources to help the development of PHRs become easier, faster and more consistent, encouraging innovation whilst supporting interoperability.

At the moment, the toolkit includes a clear definition of what a PHR is, plus:

  • PHR guidance: information on good practice for the development of PHRs in England;
  • PHR standards: a list of existing technical, security, data, design and clinical standards you can use now;
  • Research findings: who we spoke to, what we learnt and how we plan to help.

We intend to iteratively develop the toolkit with new content based on the needs of the PHR community. For example, with their help we can build a stronger evidence base for how PHRs are used and the benefits they bring.

What’s next?

We’re developing a community of practice so that people developing and commissioning PHRs can learn from each other more easily. Over the next 12 months we’re aiming to:

  • Map out where PHRs exist so that those developing them can find and learn from each other;
  • Establish new networking opportunities for anyone involved with PHR development, including a forum alongside the toolkit;
  • Share case studies about those who have successfully implemented PHRs, showing the good practice and lessons learned along the way;
  • Make it clear how PHRs fit into the bigger picture alongside programmes such as the Global Digital Exemplars and Local Health and Care Exemplars;
  • Improve the quantity and quality of evidence of PHR benefits, making it easier to find evidence to support the successful approval of local business cases.

If the toolkit is to be truly useful, it will be because the people developing or implementing PHRs see the value in coming together to share and support each other. We’re keen to develop a vibrant, self-sustaining community that pushes PHR adoption forward to a point where these tools start fulfilling the long-term aim of empowering people.

 

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