Names matter. How we describe and label things in a complex system such as the NHS makes a difference. Done well, it helps people quickly gain a shared understanding and then collaborate.
I’m lead user researcher on a key NHS Digital programme, and using the right labels helps my team engage people with great insights. If your research project has the right labels, the right people see it, recognise the relevance and rally to you.
As a team, we’ve been exploring what might support wider adoption of digital tools that help people bring together and see a range of data about their health and care, such as health records, appointments, prescriptions and results. These tools can also help people to add information themselves and share with others involved in their care.
That’s a bit of a mouthful, so when we started, we used the label ‘Personal Health Records’ or ‘PHRs’, as shorthand. We called ourselves the PHR programme team…
As you’d expect, our pre-discovery covered lots of research and policy work using the PHR label (and if you’re interested, an excellent start would be the ‘PHR Landscape Review’ from our colleagues at the Royal College of Physicians).
But research is there to challenge and disrupt assumptions. We’ve learnt that these types of tools, and ways of working with them, are emerging. And we’ve discovered ‘PHRs’ cover a spectrum of digital tools and cultural approaches and have many different names.
In its purest use, we discovered that the term Personal Health Record is seen as meaning patient ownership of the record. But this isn’t what most NHS organisations are currently considering when giving record access.
Many we spoke with don’t say ‘PHR’ at all. Instead, people would tell us “by the way, we don’t call our thing a PHR, it’s a patient portal/with write in/shared record/insert brand name here…”
And where PHR is used, the acronym can mean different things. For example, one interpretation is Person Held Record, which shows some ‘PHRs’ have ambitions to move beyond health and into care and even wider government services.
So, is ‘PHR’ a term to avoid? I’m not sure. For all that it’s a problematic label, ‘PHR’ may be the best catch-all term we’ve all got right now. People did respond to our initial engagement under the PHR banner. Two dozen commissioners, clinicians, and vendors, subject experts in the UK, US and Europe, plus third sector groups and patients at Global Digital Exemplar and Patient Online workshops felt they were part of the wider ‘PHR’ conversation.
What’s needed is more information and greater awareness. If PHR stays as an umbrella term, its meaning, and the many variations it covers, needs to be well understood. We heard consistent messages on the need for it to be far simpler, and faster, for organisations to adopt these kinds of digital tools, and understanding what to adopt is a key challenge.
A big part of our programme will be supporting just that – creating a well-publicised online resource that signposts standards to help future proof local systems. It will also help peers find each other, bring together the best of what’s already being done, including approved templates to help data sharing and information governance and case studies about PHR benefits.
We’ll be working with likely users to design the right things. That includes what we call it and how we promote it, so the right people can see and benefit from it. We can start that conversation now – if you’ve ideas, let’s talk!
We’re also looking at the best way to support, and learn alongside, those that are pushing ahead towards the pure form of PHR, where the citizen becomes the true owner of their personal health record. There’s more to understand about the needs, experiences and barriers everyone involved faces, and again, we need to use the right labels and terminology.
So, as we move forward we’ll keep putting the needs and experiences of those who benefit from these digital tools at the centre, and if you’ll bear with us keeping the ‘PHR’ flag raised for now, let’s talk, and watch this space for more on our programme.
