Jungles, deserts and a mountain

How we set out to map the patient experience evidence base

26 . 01 . 2024

There is a lot of talk in healthcare about health inequalities.

If we want to understand health inequalities, we have to hear from the people who experience them. But our recent scoping of the patient experience evidence base suggests that health inequalities are perpetuated – at least in part – because those same inequalities are built into the way that patient experience is researched.

A voyage of exploration

We sampled five different parts of the patient experience evidence base:

• Patient experience in digital healthcare

• People’s experiences of the Covid pandemic

• Experiences in urgent and emergency care

• The healthcare experiences of homeless people

• Experiences of people with rare disease

We headed out into each of these areas to see what we could see. Using a variety of search terms, we collected hundreds of reports on each topic, and then applied thematic analysis to help us make sense of the overall shape of each part of the evidence base.

What we found confirmed our worst fears.


With every single sample of the evidence base, we found areas that were densely packed with repeat studies. This was not so much duplication, as saturation.

“Access to services” in particular is a topic that seems to get investigated over and over again, year after year. Funders are spending money, researchers are spending time and patients are expending goodwill for no good reason that we could see. Their efforts are simply adding to the pile of reports rather than to the sum of knowledge.


Other parts of the evidence base were, to say the least, sparse.

In the literature on Covid, just 6% of the reports we found had a specific focus on health inequalities - when we know that the poorest communities were hit hardest by the pandemic. A mere 2% were primarily about the pandemic experiences of people who are clinically vulnerable.

On the healthcare experiences of people who are homeless, we found just two reports on experience of food insecurity, and one on experience of hygiene poverty. And yet these are fundamental determinants of health in the homeless population.

In digital healthcare, we found very little on people’s experiences of the NHS app, or experiences with electronic health records, or attitudes to artificial intelligence in healthcare.

The Mountain

As a bonus extra we took a sixth sample of the evidence base, looking at guidance notes, frameworks and toolkits for patient and public involvement. The quantity of published work is staggering: we found 536 PPI toolkits.

The problem is not with the quality: most of the guidance is well-written. But there is a mountainous quantity of it, and a great deal of it is both generic and repetitive. Guidance on engagement with “hard to reach” communities is largely noticeable by its absence.

It's not the researchers

This is not a criticism of researchers. It is common to the point of cliché to hear that underserved communities are not actually hard to reach – it’s just that researchers aren’t trying hard enough. But that ignores the context in which researchers operate.

In medical research, there are clear prioritisation processes. Research funders, broadly speaking, know what they know, and they steer researchers away from duplication and waste. They also know what they don’t know – so they can point researchers towards filling the gaps.

Patient experience work is different because no-one – until now – has mapped the evidence base to find out what we know and what we don’t know. So even when researchers are willing to make the effort to get to so-called “hard to reach” communities, they have trouble seeing who has already

been spoken to and who hasn’t. They might struggle to see what topics have already been covered, and where the gaps are. And unlike medical researchers, they don’t get a steer on where to go next.

Towards better – and fairer - research

Our evidence mapping can put an end to what is, essentially, a free-for-all in patient experience research.

Our reports and data visualisations have created a foundation for prioritisation processes of the kind that are routinely used in medical research. We have also laid the basis for tackling inequalities in health by tackling inequalities in evidence-gathering.

So we are now looking for partners and collaborators to help take this work to the next level. To a point where researchers can stop wasting time. Where research funders can stop wasting money. And where the so-called “seldom heard” can come out of the shadows, and their presence or absence in the patient experience evidence base can become fully visible.

Do you want to partner with us? Please get in touch: info@patientlibrary.net

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