The Patient Safety Commissioner’s strategy aims to ‘embed patient safety and patient voice throughout the healthcare system’.
This really matters. Time and again, it is patients and families who are sounding the alarm on healthcare safety. This has been shown by multiple inquiries – Mid Staffordshire, Morecambe Bay, Gosport, Shrewsbury & Telford, East Kent, Paterson, pelvic mesh…
So patient voice is a vital part of patient safety. But what would ‘embedding patient voice’ look like?
For us, the starting point was the realisation that an NHS claiming to be both patient-centred and evidence-based actually had no coherent evidence base for patient experience. Medical research databases are everywhere but there was no equivalent for patient-centred research. So we set up the Patient Experience Library to plug the gap. The library holds tens of thousands of documents, from government bodies, health charities, patient voice groups, policy think tanks and academic institutions. It is open access and free to use.
So patient voice is now embedded in the healthcare system in the form of a large-scale evidence repository open to all. But embedding voice within the system is not the same as embedding voice within practice. We realised that collating a mountain of research literature was not enough. We had to help people to know how to use it, so we have:
- developed analytics to help health professionals make sense of patient feedback. One example is our surveys tracker which puts the key datasets for English NHS Trusts all in one place, and cross-references common themes.
- mapped the evidence base to steer researchers away from duplication and waste and towards filling gaps in knowledge. Some communities are persistently unheard and that can lead to safety issues such as low vaccination rates and serious harm from diseases such as Covid and measles. Our mapping can help researchers to see which voices have not been heard and to respond accordingly.
- built a training tracker to help patient experience staff find opportunities for learning and professional development. We did this after noticing that patient experience staff are almost unique in the NHS workforce in having no formal qualifications or systematic professional development. We are calling on NHS England to put that right. And in the meantime, alongside our training tracker, we also publish a quarterly journal to keep staff up to speed with the latest and best research.
To embed patient voice, we have to work systematically. Medicine works because clinicians have a systematic learning infrastructure: medical research feeds into professional training, clinical guidelines, practice protocols, journals, and conferences. And all of that means that clinical practice is evidence-based and effective.
We are developing a similar learning infrastructure for the people responsible for hearing and acting on patient voice: patient experience staff, PALS teams, complaints handlers, local Healthwatch staff and others. Like clinicians, they need help to understand what to do with all the research. And with a systematic approach, patient voice – alongside medical science – can become embedded throughout the healthcare system.
Miles Sibley is a co-founder of the Patient Experience Library.