The Patient Experience Library

An online tool to help identify gaps in patient experience research
An EPIC project
Walking people blur. Lots of people walking in the city. Wide panoramic view of people crossing the road.
Wondering how many people are waiting for oral surgery in Somerset? Or whether maternity patients are happier in Harrogate or Hull? Find out at the click of a button with The Patient Experience Library – an online repository of more than 70,000 documents, surveys, and reports related to patient feedback in the healthcare services. 
Launched in 2016 to catalogue the wide body of research related to patient experience, the platform contains a wealth of evidence gathered by government bodies, health charities, patient voice organisations, and academic institutions that is free to search and download. The Patient Experience Library is a digital service that fits with EPIC's vision of strengthening patient empowerment and improving user experience and the team were more than happy to collaborate on an evidence mapping project that has the potential to direct future research in the field. 

Background  

Developed by co-founders Miles Sibley (who previously worked for the Healthwatch organisation) and software engineer Anthony McQuillan, the idea for the Patient Experience Library arose from the belief that patient experience work should be on the same evidence-based footing as clinical work. Miles and Anthony noted a lack of a professional infrastructure regarding patient experience: 
  • While the NHS is amply provided with medical research databases (Pubmed, Medline, Cochrane, etc.) there was, until the Patient Experience Library, no equivalent for patient experience research.  
  • While bodies like NICE have research prioritisation processes to ensure that research funding and effort is well targeted, there is no systematic prioritisation in patent experience work. No-one has a strategic overview of strengths and weaknesses in the patient experience evidence base.  
  • Clinicians are given analytical tools and diagnostic aids to help them translate research into practice. There are few, if any, good quality analytical tools for patient experience data.  
Having established the library as a resource, Miles and Anthony wanted to improve the functionality so that people could make easy use of it for analytical purposes.  They approached EPIC for assistance researching and developing a knowledge translation tool that could help clearly identify areas of research in which patient experience is oversaturated, and areas where there are gaps in evidence. 

If you look at bodies like National Institute for Health Research (NIHR) and National Institute for Health and Care Excellence (NICE), they have very clear processes for research prioritisation.

I realised that in patient experience work, nobody anywhere had any handle on who was doing what in terms of the research. What that meant was – and we observed this with the literature coming into the library – there were tonnes of reports on very common issues like patient experience with trying to get an appointment with their GP that all say more or less the same thing, so the time and effort being spent isn’t really adding to the sum of knowledge. At the same time, in other areas of the evidence base there are big gaps and a lot of that is in the area of health inequality; if you want to look at the experience of Armed Forces veterans in healthcare, a lot of them when they come out of the service have things like PTSD, sometimes they have drug and alcohol problems, difficulty readjusting to society and then that gives them health problems as well – there’s not a huge amount of literature about their experiences in healthcare, and there’s many other similarly overlooked groups.

Co-founder Miles Sibley

How has EPIC helped the Patient Experience Library? 

Reaching out to EPIC researcher Dr Rebecca Baines, the Patient Experience Library brainstormed how to map what is in the evidence base on patient experience and use it as a basis for helping organisations better prioritise their research efforts. This led to a proposal for a proof-of-concept study. Rebecca connected Miles and Anthony with Apollo Health Innovations to assist with the study and EPIC awarded them £4,000 in Challenge Fund grants to help them sample two areas from the evidence base (people’s experiences throughout the COVID-19 pandemic, and people’s experiences in digital healthcare). Using the data from the library, they created a way of analysing and coding the main themes and subthemes for each area and turn them into visualisations to show what literature had been produced, which bodies produced it, which demographics were included, and where the research took place.  

That was fantastic – it felt like a really big breakthrough because it was the first time that anybody has ever attempted to understand this whole body of research. There’s millions of pounds going in and more and more research done every year and yet nobody had a handle on how we’re prioritising it. So for a very small amount of time and investment from EPIC we got huge value out of it. What was fantastic as well was that EPIC’s approach – because it’s about innovation – is that we found a funder who was willing to take a risk on this.

Co-founder Miles Sibley

What’s next for the Patient Experience Library? 

Based on their proof of concept, the Patient Experience Library have been able to secure a grant from a Health Foundation project to refine their approach and build tools within the library for faster search and analysis along with interactive visualisations. The project will run until the summer of 2023 and enable them to produce six new evidence maps as well as improving functionality within the library. They are hoping to take these results to large bodies such as the NHS England Equality and Health Inequalities Hub and propose the tool as a way in which they can better direct their research funding to avoid duplication and fill gaps in often ignored, hard-to-reach communities. The response that they get from these organisations will help them decide how to focus their efforts over the next few years so that the library has the most practical use possible. 

In the area of healthcare there’s so much funding that you can only get if you’re an NHS body or a charity – for us as a social enterprise to be able to apply to the Challenge Fund was fantastic because the opportunities are very limited. It enabled us to show what we were trying to achieve, which then opened that door to the further development funding and work.

Co-founder Miles Sibley