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Cambridge University Science Magazine

Medical diagnosis is based on the principle that those suffering from an illness or disease have unique and useful knowledge about it; patients provide some knowledge to the doctor, who can then use that information to figure out their ailment. Yet, in 2019, #PatientsAreNotFakingIt began to trend on Twitter accompanied by countless stories of patients being accused of outright lying or doctors simply not taking their experiences seriously. It became clear that there was a common problem the validity of patient experiences was being disputed, particularly when they conflicted with established medical knowledge.

How patient experiences contribute to medical knowledge

When it comes to patient experiences contributing to medical knowledge, rare diseases are a useful case study. Rare diseases are rare, the UK defines them as diseases that have a prevalence of less than 1 in 2,000 people. This makes them challenging to study as randomised controlled trials (the gold standard in medical research) rely on having large, representative samples. Some diseases are therefore entirely reliant on anecdotal accounts of patients’ experiences in order to be understood. For example, in the case of 22q11 Deletion, or DeGeorge’s Syndrome, a set of concerned families provided evidence of a link between the syndrome and certain psychiatric disorders. This evidence, stemming from their own experiences, led to a redefinition of the syndrome. Scientific and medical understanding of rare diseases is therefore based on clinical reports and patient profiles rather than trials and large-scale studies this emphasis on the patient naturally leads to their knowledge being valued. 

However, for some chronic illnesses, the story is very different. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is poorly understood in every sense causes, symptoms, and treatment which naturally lends itself to dispute. In 2021, the National Institute for Health and Care Excellence (NICE) published updated guidelines for treating ME/CFS which, unlike the previous iteration, did not recommend cognitive behavioural therapy or exercise therapy. This was largely in line with the experiences of ME/CFS patients, many of whom reported “post-exertional malaise” after exercise, and who disputed the reasoning behind using CBT  a psychological tool  to treat a physiological illness. However, others argued that this went against evidence from clinical trial results supporting the efficacy of these treatments, and that NICE was motivated by politics rather than evidence. A series of back-and-forth arguments ensued between doctors (some of whom supported the change and were pejoratively described as ‘ME activists’), NICE members, and ME/CFS patients. The evidence was, and remains, fairly inconclusive; both sides have countless arguments for and against any given trial or study.

The 2021 NICE guidelines came many years after patients first raised these concerns; it is likely that many people with ME/CFS received inappropriate treatment as a result of patient experiences not being listened to earlier. Even since 2021, it remains a controversial area with many patients still reporting that medical professionals are not listening to them.

This begs the question of why, faced with limited empirical evidence, patient experiences of rare diseases are so highly valued, but their experience of chronic illnesses are not?

Why should patient experiences contribute to medical knowledge?

In the above cases, the value of patient experience is linked to its ability to further medical understanding. Whilst this clearly is incredibly useful, the value of patient experience goes beyond that to the care that a patient receives. One systematic review found strong positive associations between doctors listening to patient experience and quality of care received. Another study, which drew on healthcare ethics, argued that decisions about treatment must account for all relevant evidence including patient experience. To that effect, the NHS has recognised the value of patient contributions, which now forms an important part of how they analyse the effectiveness of the care that is given.

Looking at the question of how patients receive better care through being listened to, one interesting explanation is ‘evidence-based activism’. This describes the scenario where patients, or patient advocacy organisations, are able to combine their own experiential knowledge with existing scientific knowledge to insert themselves into the medical conversation and push for change from within. Their aim is not necessarily to contribute to scientific knowledge (though this, as seen earlier, is useful), but rather to create connections between separate groups and institutions. Through activism and use of scientific knowledge, patients and patient advocates are seen as more ‘legitimate‘ by the medical establishments, and are therefore able to push for positive changes in the care they receive.

Evidence-based activism was used to great effect in the context of the AIDS movement of the 1980s. Though there was plenty of ‘traditional’ activism involved in pushing for better treatment, it was the evidence-based activism that proved more effective. The activist group ACT UP became famous for its militant approach and direct action, but it was likely their co-opting of scientific knowledge, data, and language that allowed ACT UP activists to be so impactful. Beyond the impact in the medical world, the evidence-based activists were also able to effectively push for positive changes in wider socio-political issues of stigmatisation and acceptance of people with AIDS. It is clear that evidence-based activism, enabled by patient knowledge, is a powerful tool for change, and this provides a useful explanation for how listening to patients leads to better treatment and experience.

The risks of pseudoscience

Throughout the 1990s and 2000s, a major patient advocacy movement was active. Combining many of the themes identified earlier poorly understood illness, rejection by medical professionals, use of scientific data and language this movement became incredibly popular. This was a movement in support of those injured by vaccines based on the belief that the MMR vaccine caused autism. This was, of course, proven to be completely untrue, and perhaps shows the issues of following patient experience. Parents were coming forward with anecdotal examples of harm, at odds with the population-level epidemiological studies that the government was producing. Other patient advocates reviewed over 70 vaccine safety studies and concluded that none adequately refuted the harm of the vaccine; a clear example of evidence-based activism. 

It is important to be sceptical, but we can see how activism can derail into a distrust of science; people begin from the assumption that their experiences are true and the scientific evidence, if it disagrees, must then be wrong. In this case, evidence-based activism becomes about trying to use patient experience to refute the conclusions from the scientific data; instead, it should be about trying to synthesise the two evidence strands.

It is easy to conclude from this that we should treat patient experiences with scepticism and not always listen to them. However, there is also an argument for listening more: the parents felt ignored, both by individual doctors as well as the medical establishment more broadly. Large epidemiological studies did not help to convince anyone, because it ignored their own reality and experiences. Population studies were too broad and ‘not looking in

the right place’ as one parent argued, ‘they are not looking at our children’. There is much to learn from the MMR case about effective science communication, but one thing is clear: patients (or their carers) must feel listened to. Valuing the contribution that patient experiences can make to science is not just about the actual knowledge contributed, but a way of allowing them to relate to science and follow it.

Where now?

It can be challenging to find a balance: on the one hand, listening to patient knowledge can improve their experience and the care they receive, but on the other it is important to identify and reject pseudoscience. In some domains such as rare diseases, this balance is achieved effectively; in others, such as ME/CFS, it remains elusive. Patient advocacy and activism can often have a bad reputation, but it is incredibly valuable for both increasing knowledge and understanding, as well as for improving patient experiences and outcomes.

Many of these problems are also structural. Doctors have an extremely limited time per patient, and can struggle to keep up-to-date with the latest evidence on every illness. These are not things that will simply be solved by listening to patients, but valuing patient experiences is a good first step.

Jacob Smith is an Msc student in Science and Technology Studies at the University of Edinburgh, having just graduated from Natural Sciences at Trinity Hall. Artwork by Josh Langfield.