Patient “stories” vs. medical “reports”: The Patient Experience Library

by Carolyn Thomas    ♥   @HeartSisters

If a doctor speaks up when something goes terribly wrong at work, it’s called an incident report, but when a patient speaks up when something’s gone wrong, it’s a complaint. Words do matter, and listening to what patients are telling their doctors is important. The incident report is an example of what healthcare professionals will accept as admissable evidence based on their learned experience, while the patient complaint is too often seen as merely anecdotal, based only on lived experience – so it’s considered to be inadmissable evidence. 

“Inadmissable Evidence:   The Double Standard in Evidence-Based Practice, and How it Harms Patients”  is also the title of a report from the U.K.’s Patient Experience Library.  This non-profit organization offers a unique online database (including many free resources – like a Literature Review Service listing existing evidence for patient experience topics you’re interested in).

Miles Sibley co-founded the Library with Anthony McQuillan in 2016 because they knew that,  although the National Health Service (NHS) in their country was well-served by large databases of medical research, there was no equivalent for patient experience/involvement. And the Patient Experience Library now holds over 70,000 documents from government bodies, health charities, patient voice groups, policy think tanks and academic institutions – all to to help identify gaps in patient experience research. All documents and reports are open access and free to use. Miles explained:

“We started by setting up the Patient Experience 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.  We have also 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 patient safety issues. Our mapping can help researchers to see which voices have not been heard and to respond accordingly.”

And here’s how Miles described the Library’s Inadmissable Evidence report:

“Our report points to a double standard that takes medical research seriously, while dismissing the experiences of patients as just anecdotal. The institutional culture finds it hard to hear concerns raised by patients.  The report asks:  “Why does health care seem unable to accept patient feedback as a valid form of evidence?”

“NHS care strategies emphasize the importance of ‘person-centred care’- and at a one-to-one level with patients, staff do offer deeply personal and compassionate care. But we need a similar learning infrastructure and evidence base for patient experience, too.  This can’t happen until listening to patients holds higher status.”

Also from the U.K. came the independent Medicines and Medical Devices Safety Review  (known as the Cumberlege Review into how the British health system had responded to reports from patients about harmful side effects from medicines and medical devices).

This review followed patient-led public campaigns – for example, on the use of pelvic surgical mesh. At one time, this mesh was considered by surgeons to be the ‘gold standard’ for stress incontinence and pelvic organ prolapse in female patients.  Unfortunately for many of those women, the mesh resulted in harm because the polypropylene mesh could erode and harden, cutting through tissue and causing intense pain. This Cumberlege Review was commissioned “because female patients did not feel listened to or acknowledged when they expressed their concerns about their medical care.”  Investigations into women’s horror stories finally resulted in withdrawal of the mesh material in the U.K., Canada and the U.S. Two years ago, pelvic mesh implant manufacturer Johnson & Johnson reached a $300 million settlement in a class action suit after thousands of women worldwide reported complications from the mesh products including chronic pain, painful sexual intercourse and incontinence.

The overriding question asked in the Cumberlege Review was how the healthcare system listens and responds to serious concerns raised by patients – and by women in particular. The Review’s final report was entitled “First Do No Harm” ¹   

Harm, as defined in this review, is inflicted “when patient stories from countless women are not seen as important, and when they are not listened to.”

As the report author’s Julia Cumberlege wrote:

“Patient experience must no longer be weighted least in the hierarchy of evidence-based medicine”.

In a column he wrote for the British Medical Journal (BMJ), Miles Sibley explained in chilling detail the need for reports like the Cumberlege Safety Review:

“This report set out extensive evidence of several types 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. But this harm was avoidable because patients and families had repeatedly spoken out about the ill effects of some treatments they’d received. But no one had wanted to hear them.

““Patients often know when something has gone wrong with their treatment. All too often they are the first to know.

“Too often our healthcare system as a whole seems institutionally deaf to the patient voice. Medical evidence is respected, and built into professional training and practice. But evidence based on patients’ experience, described as anecdotal or ‘soft’ evidence, is all too often ignored.”

Miles also called for steps that would “strengthen evidence-based practice and ensure that the patient voice is better heard.”  These steps include better research prioritization, improved analytical tools and a professional learning infrastructure for patient experience work.