Building a better evidence base
Modern healthcare is based on the idea of “evidence-based medicine”.
Clinicians have access to huge databases of medical research. Their training and professional development are informed by research, and their clinical guidelines, practice protocols and diagnostic aids are evidence-based.
Conferences and journals help busy practitioners keep abreast of a non-stop flow of new findings. Medicine has a brilliant model for generating new knowledge and translating it into practice.
But when it comes to “patient experience”, the model falls apart.
Not because the evidence isn’t there – every year in the UK alone, there are thousands of published studies on patient experience. Journal papers, think tank reports, and large-scale surveys draw heavily on people’s lived experience to help healthcare systems learn. But the machinery of knowledge translation, so well-established on the medical side of healthcare, is strikingly absent from patient experience work.
We set up the Patient Experience Library after realising that the UK National Health Service (NHS), which aims to be both “patient-centred” and “evidence-based” actually had no coherent evidence base for people’s experiences in healthcare.
When we approached national NHS bodies to suggest the idea of a national research database for patient experience, we were told that the task would be too difficult. We were surprised by that – after all, nobody says that medical research databases are “too difficult”. So we went ahead and built the library anyway. It took us a year and a half, working evenings and weekends with no funding. But we did it – because these things might be hard but they are never “too hard”.
Having built the library, we realised there were further big gaps in getting patient experience evidence into practice. The knowledge translation machinery simply wasn’t there.
- NHS staff entrusted with the complex task of learning from patient experience have no professional development or specialist qualifications for the job. So we are working with Brighton and Sussex Medical School to launch the first ever continuing professional development course for patient experience staff.
- There are no reliable analytics to help NHS staff make sense of data coming from sources such as national patient surveys. So we have built a patient surveys tracker to put all the data in one place, searchable by provider and with cross-referencing of common themes.
- Research into patient experience is poorly co-ordinated, with no strategy or research prioritisation at the national level. So we have conducted a series of evidence mapping exercises to identify duplication and waste and to show how research funds and researcher time could be used more effectively.
There is an important question running through all of this. In healthcare systems that pride themselves on being both patient-centred and evidence-based, why is patient experience work so neglected?
The answer is cultural.
Medicine is a scientific endeavour. Its methods are rigorous and empirical. The best evidence is seen as objective, replicable, reliable. Patient experience does not fit comfortably into this model. People’s stories are seen as subjective, emotional, lacking in rigour and, ultimately, unreliable. Our Inadmissible Evidence report shows how this leads to a double standard in evidence-based medicine – and a culture that all too often harms patients and families.
Evidence-based medicine has created immense benefits for humanity. The scientific method, coupled with powerful knowledge translation methods, has transformed the treatment of disease. But healthcare systems that relegate patient experience to the bottom of the hierarchy of evidence cannot claim to be truly evidence-based. At best, their use of evidence is partial and therefore only partially effective. At worst, they miss vital opportunities to improve care, and they fail in their promise to do no harm.
We – the Patient Experience Library – are on a mission to get patient experience evidence taken
as seriously as medical evidence. We believe that the culture in medicine is already starting
to shift. There are many, many health professionals who understand the value of patient feedback – not just as “stories”, but as evidence. Sooner or later, the medical establishment will begin to catch up. In the meantime, we are building the evidence base and developing the machinery of knowledge translation. If you’d like to lend a hand, please get in touch.
