The Patient Experience Library

In this post, Havi Carel interviews Miles Sibley about the Patient Experience Library.

Havi Carel (HC): What is the Patient Experience Library? 

Miles Sibley: The Patient Experience Library acts as the national evidence base for patient experience and engagement. Operating as an online research database it contains studies and reports from sources including government bodies, patient voice organisations, health charities, academic institutions and policy think tanks. The repository runs to tens of thousands of documents, and more are being added all the time.  So the library also works on knowledge translation – helping policymakers, clinicians and patient advocates to understand what is in the research, and how to use it.  

HC: Why did you set it up? 

MS: We set up the library after realising that an NHS aiming to be both patient-centred and evidence-based actually had no coherent evidence base for patient experience.  Health services draw on multiple medical research databases to inform policy, professional training, clinical guidelines and more.  But there was no equivalent for patient experience.  So we built the library to plug the gap.   

HC: What are the barriers to accessing data on patient experience?

MS: Firstly, the data is a mess.  It comes from the Friends and Family Test, complaints, national patient surveys, the local Healthwatch network… All this and more is published across multiple websites and can be very hard to keep track of. 

Secondly, there is no organisational memory.  Government funded “patient voice” initiatives began with the Community Health Councils in the 1970s. Those were succeeded by Patient and Public Involvement Forums, then by Local Involvement Networks, before the current iteration, Healthwatch.  All gathered large volumes of evidence on patient experience, but it was never properly catalogued and preserved. So as each initiative shut down, its entire body of knowledge went with it.

Thirdly, there is no research prioritisation at the national or strategic level.  While medical research is (at least to some extent) geared towards reducing duplication and opening up new areas of knowledge, patient experience research is, essentially, a free-for-all.  There is extensive waste and duplication, along with large gaps – particularly when it comes to marginalised groups such as minority communities, or people with rare diseases.

One of the posters
by the Patient Experience Library

HC: Why do you think it's important to overcome these?

MS: For reasons of equity and justice.  

For example, the NHS promises equal access to its services for all citizens.  But the reality is that the poorest people in the poorest communities always have the poorest health, and usually have the worst access to services.  Statistics on mortality and morbidity can help us to understand some of the consequences.  But to really understand health inequity, we need to hear from the people most affected by it.

Another example:  inquiries into avoidable harm (eg from pelvic mesh, or deaths in maternity services) always tell of patient concerns being deflected and denied.  Medical records are respected and trusted, while patient feedback is dismissed as "anecdotal evidence".  This deep-seated epistemic injustice lies at the heart of harm.

One more: medicine has a fantastic learning infrastructure.  Clinicians are given world class learning support though professional training, clinical guidelines, practice protocols, diagnostic aids, conferences and journals.  But people charged with hearing "patient voice" (PALS teams, complaints handlers etc) have no professional qualifications, no analytics, and no professional forums.  Their learning support is deemed unimportant because lived experience is also deemed unimportant.

HC: What do you hope the patient experience library will achieve?

MS: We see a double standard in evidence-based practice: medical evidence is cherished and respected, while patient experience evidence is considered an optional extra.

So we want to end the double standard. Our steps towards that include:

• Building the evidence base. The library is an open access repository of evidence on patient experience: the only one of its kind in the world. Medical research databases are taken for granted – we want to show that a patient experience research database is equally feasible.
• Building analytics.  Patient experience evidence doesn't have to be incomprehensible.  Our surveys tracker, for example, puts key datasets for English NHS Trusts all in one place and cross-references key themes to aid understanding.
• Mapping the evidence.  Patient experience research should not be a free-for-all, with some communities permanently excluded.  Our evidence mapping shows that it is possible to lay the foundations for better prioritisation and higher value research.

Ultimately, we are on a mission to get patient experience evidence taken as seriously as medical evidence.  We are showing how that can be done.  Our work is both a challenge and a helping hand to an NHS that says it wants to be patient-centred.

Miles Sibley is a co-founder and Director of the Patient Experience Library. As an advocate for healthcare services that are both person-centred and evidence-based, he has served on the Board of HQIP, and is currently a Non-Executive Director with Care Opinion. He is the author of Inadmissible Evidence and has written numerous articles on patient and public involvement for the BMJ and others.