Inadmissible evidence: The gap between promises and practice in person-centred care

Miles Sibley 

Miles Sibley is co-founder of the Patient Experience Library, and author of Inadmissible Evidence:  the double standard in evidence-based practice, and how it harms patients.

The UK's National Health Service (NHS) claims, in common with most modern healthcare systems, to be person-centred.  And in common with medicine worldwide, its practitioners say that they are evidence-based. 

On the face of it, these claims appear true.  NHS England has a personalised care team, promoting "choice and control" for patients[i].  And the organisation's Long Term Plan describes “a strong scientific tradition of evidence-based decisions about care”[ii].

Closer examination, however, suggests that these claims might be open to question.  We set up the Patient Experience Library after realising that while the NHS is replete with medical research databases, there was no equivalent for patient experience.  Six years later, the library holds over 70,000 documents on patient experience and engagement.  The evidence was always there, waiting to be collected and catalogued.  But no-one had thought to do so.

The story reveals a kind of double standard in evidence based practice - one in which medical research evidence is respected and well used, but patient experience evidence is largely disregarded. At best this is disrespectful to patients who take the time to relate their experiences via surveys, focus groups and formal research.  At worst, it leads to large scale avoidable harm.  Two recent incidents illustrate this. 

From PIP to mesh

The first incident involved silicone breast implants, produced by the French company Poly Implant Prothèse (PIP).  Unknown to patients, the company replaced medically approved silicone with industrial grade silicone, causing harm to an estimated 400,000 women worldwide[iii].  An investigation found "a deliberate company wide cover up"[iv] and the company's founder was subsequently jailed.

A second large scale UK disaster has been exposed via a review of medicines and medical devices including Primodos, Sodium Valproate and pelvic mesh.  In the UK these products have harmed many thousands of women, with "life-changing consequences, not only for those directly affected, but for their families and friends too"[v].

The damage has been both physical and mental.  The medicines and medical devices review, for example, describes injured women facing a "struggle to be heard",  "not being believed" and "a sense of abandonment".  It further mentions "breakdown of family life", "loss of identity and self-worth" and "a persistent feeling of guilt".

These harms were avoidable because manufacturers and providers knew about them. Patients had been speaking up - sometimes for years. But no one had wanted to hear them. 

Inadmissible evidence

The double standard in evidence-based practice forces patients who are harmed in healthcare to wage long battles for justice.  The British women injured by PIP implants have - so far - spent ten years seeking redress.  The medicines and medical devices review was "prompted by patient-led campaigns that have run for years and, in the cases of valproate and Primodos over decades"[vi]. 

The campaigns drag on for so long because healthcare systems - despite their claims of being both person-centred and evidence-based - prefer not to have to listen too much to patients.  Their evidence becomes inadmissible.

Redressing the balance

We - the Patient Experience Library - are on a mission to get patient experience evidence taken as seriously as medical evidence.

The library itself is a free, open access database with over 70,000 documents from sources including government bodies, health charities, patient voice organisations, policy think tanks and academic institutions. 

In an online era, libraries can no longer act as simply passive repositories - interactivity is key.  So we help people to interrogate the literature via tools such as our surveys tracker, which groups key patient experience datasets by provider, cross-referencing common themes to aid understanding.  

We know that waiting for treatment fundamentally affects patients' perceptions of the quality of their care.  And yet waiting times data is hard to find and even harder to make sense of.  So we have created a waiting list tracker to bring the data into the light.

Our Healthwatch maps bring together thousands of reports from England's largest patient voice network, visibly connecting them with the places and communities that are the sources of evidence.  In a further development, we have started to create evidence maps - revealing areas of saturation in the evidence base, and exposing gaps, particularly relating to health inequalities.

Solutions like this are entirely feasible, and any healthcare system that claims to be person-centred and evidence-based should be pursuing them.  Because, in the words of Julia Cumberlege, Chair of the medicines and medical devices review, patient experience "must no longer be considered anecdotal and weighted least in the hierarchy of evidence-based medicine"[vii]. 

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