In July 2020, the Independent Medicines and Medical Devices Safety Review published a report entitled “First Do No Harm”.¹ Also known as the Cumberlege Review, the report set out extensive evidence of avoidable harm in healthcare. It described “heart wrenching stories of acute suffering, families fractured, children harmed”. The suffering had occurred over years, even decades.

The harm was avoidable because patients and families had repeatedly spoken out about the ill effects of the treatments they had received. But no one had wanted to hear them.

In a letter to the Secretary of State of Health and Social Care, Baroness Cumberlege (chair of the review) said, “The healthcare system… does not adequately recognise that patients are its raison d’etre. It has failed to listen to their concerns… and has too often moved glacially”.²

The words “healthcare system” are important. The NHS is full of dedicated staff who, at a one-to-one level with patients, offer deeply personal and compassionate care. But too often the system as a whole seems institutionally deaf to the patient voice.

Taking Cumberlege as its starting point, The Patient Library’s latest report, Inadmissible Evidence³ reveals a double standard in evidence-based medicine. Medical evidence is respected, and built into professional training and practice. Evidence based on patients’ experience, described as “anecdotal” or “soft” evidence, is all too often ignored.

It was ignored at the Mid Staffordshire NHS Foundation Trust, where, in the words of Sir Robert Francis, the Board “did not listen sufficiently to its patients”.⁴ It was ignored at Morecambe Bay,⁵ where patients’ concerns about harms in maternity services simply disappeared within “a pattern of failure to recognise…the problem, with, in some cases, denial that any problem existed”. The same kind of pattern occurred at Southern Health,⁶ and at Gosport,⁷ and in the Northern Ireland hyponatraemia scandal⁸ and at Cwm Taf.⁹  It seems likely that ongoing investigations at Shrewsbury & Telford¹⁰ and East Kent¹¹ will reach the same basic conclusion: that when things go badly wrong patient experience evidence is deemed inadmissible.

Over and over again, our evidence-based healthcare system has not wanted to accept patient feedback as evidence. And so, over and over again, patients have been harmed—unnecessarily, and in large numbers.

It doesn’t have to be this way. We—the Patient Experience Library—are on a mission to put patient experience work on the same evidence-based footing as clinical work.

We started by setting up the library as the national evidence base for patient experience and involvement. We have gone on to develop analytical tools to help NHS staff find and make sense of patient feedback. We routinely disseminate research findings in formats that can be easily assimilated by busy professionals.

But we want to go further. We want to see:

• Parity of access to patient experience evidence alongside medical evidence. NICE and Health Education England make a series of medical research databases available to all NHS staff. They should make patient experience evidence available on the same basis.
• Research prioritisation. Bodies such as NICE prioritise research by understanding which areas of clinical practice are well evidenced, and which merit further enquiry. We need a similar approach for patient experience evidence, with better targeting of research effort and funding.
• Professional development. Clinicians learn continuously via training, guidelines, and journals. People charged with the challenging responsibility of hearing from patients should also have a systematic, evidence-based learning infrastructure.
• Analytics. Clinicians have diagnostic aids to help them make sense of complex symptoms and conditions. Patient experience staff should have their own analytical tools to help them make sense of complex evidence emerging from surveys, complaints, online feedback and more.

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” or “complaints”, but as evidence. Sooner or later, the NHS—at the institutional and system level—will begin to catch up.

In the meantime, we are propelled by comments like this, from the Cumberlege review:

“Patients often know when something has gone wrong with their treatment. All too often they are the first to know. Their experience must no longer be considered anecdotal and weighted least in the hierarchy of evidence-based medicine.”

The Patient Experience Library’s report, “Inadmissible Evidence: The double standard in evidence-based practice, and how it harms patients” is available as a free download here.

Miles Sibley is a Director for the Patient Experience Library, the national evidence base on patient experience and involvement.

Competing interests: MS is a Director of the Patient Experience Library. The library is entirely self-financing, it receives no grant funding and accepts no advertising.

References:

1. Independent Medicines and Medical Devices Safety Review. (2020). First Do No Harm. The report of the Independent Medicines and Medical Devices Safety Review.
2. Ibid.
3. Sibley, M. (2020). Inadmissible Evidence: The double standard in evidence-based practice and how it harms patients: Patient Experience Library.
4. The Mid Staffordshire NHS Foundation Trust Public Inquiry (2013). Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry Executive summary. HC947.
5. Kirkup, B. (2015). The Report of the Morecambe Bay Investigation. The Stationery Office.
6. Mazars LLP. (2015). Independent review of deaths of people with a Learning Disability or Mental Health problem in contact with Southern Health NHS Foundation Trust April 2011 to March 2015.
7. House of Commons. (2018). Gosport War Memorial Hospital. The Report of the Gosport Independent Panel. HC 1084.
8. The Inquiry into Hyponatraemia-related Deaths. (2018). Report.
9. Broderick, C. (2019). Listening to women and families about Maternity Care in Cwm Taf.
10. BBC News. (2020). Shropshire baby deaths review: What do we know? Retrieved from:  https://www.bbc.co.uk/news/uk-england-shropshire-46206917
11. The Telegraph. (2020) East Kent maternity scandal: Hospital prosecuted over death of seven-day-old baby. Retrieved from: https://www.telegraph.co.uk/news/2020/10/09/east-kent-maternity-scandal-hospital-prosecuted-death-seven/