The risks of equating ‘lived experience’ with patient expertise


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  1. Mabel van Dijk

    This article is excellent, and important at a time when so many auto-didacts and people boasting about qualifications from the University of Life (Ph.D’s in Lived Experience) find it easy to get an audience.
    No true expert boasts of certainty, but give me someone with specific academic qualifications interpreting my X-rays, please. Sure, power imbalances need examining,but everywhere, all the time, not just in examining chronic illness.
    Thank you , Frank Gavin for your thoughtful, interesting piece.

    • Frank Gavin

      Thank you for your response, Mabel–or is it Margaret? I think you may have social media or maybe the internet in general in mind. Yes, there have been many benefits, but it’s hard to imagine the false claims about vaccination would have spread so quickly and persisted so long without social media and the internet. But that’s a whole other can of worms.

      • Aurelia

        Just a quick correction again. Anti-vaccine have a very long history and were often fostered by Doctors mistakes–or their reports they issued of vaccine problems. It wasn’t the Internet, and it wasn’t patients.
        Note: Great Osmond Hospital’s report in 1974, and the Lancet publishing a doctors’ 1998 measles/autism paper without checking his data or his records. The Lancet left that paper up on it’s website for 12 years even though the link was disproved quickly. They only took it down after someone else proved it was fraud.
        Doctors did this, not patients. And not the Internet.
        https://measlesrubellainitiative.org/anti-vaccination-movement/

        • Frank Gavin

          Thanks for your comment, Aurelia. I agree that anti-vaccination movements–like the resistance to fluoride and to pasteurization–long preceded the internet. But I’ve heard and read many people (including someone from the University of Waterloo, speaking recently on CBC radio) observe that the internet has been a powerful means for extending and entrenching these movements. I’ve taken a particular interest in the campaign against the MMR vaccine and have a hard time imagining the discredited Wakefield claims being taken up by so many without the internet.

  2. neil stuart

    A very thoughtful article — beautifully set out. My understanding was that the idea of an expert patient was advanced in part as Frank Gavin indicated to address the power imbalance between professional providers and patients. And it was also used to help legitimize and promote the role of patients in managing their care. The Expert Patient Programme in the English NHS was all about enlisting patients with chronic conditions in the management of their care. There was a BMJ editorial (March 25, 2004) entitled “ ‘Expert patient’—dream or nightmare?” suggesting that for many practising physicians the term expert patient had become synonymous with the over-informed patient “…..The suspicion is that for many doctors, the expert patient of the imagination is the one clutching a sheaf of printouts from the internet, demanding a particular treatment that is unproved, manifestly unsuitable, astronomically expensive, or all three…” Hopefully, we have advanced beyond this.

    • Frank Gavin

      Thank you for your response, Neil. I agree that we have to get beyond all the caricatures and sweeping generalizations. I recognize that caricature of the expert patient. There’s also the caricature of the doctor whose entire knowledge of a condition is derived from a one-hour lecture long ago but who is making pronouncements to the patient who’s lived with the condition for twenty years–as depicted in a widely circulated tweet. Has it ever happened? Probably. But it is far, far from the norm.

    • CB Nelson

      The over-anxious patient who reads too much and may understand too little certainly exists. But let us not forget that the opposite end of the spectrum is certainly there as well. There are countless cases where astute, aware and experienced patients have saved themselves from over treatment and medical harm by knowing more about their own details than any physician present. Our mental models also need to make space for that kind of patient, and too many arrogant doctors with short attention spans still need to learn, listen and respect the patient perspective too. I counsel patients all the time to respectually persist if they are pretty sure mistakes are happening.

      • Frank Gavin

        I don’t disagree with anything you’ve written here, CB, except possibly with the idea that a patient can read too much–though I may have misunderstood what you wrote.

        I agree that there have been many cases of doctors being arrogant and dismissive of–or simply not interested in–what patients say and know. My worry is that what you call, correctly, opposite ends of a spectrum will be seen as more common than they are. Most situations fall between the opposite ends where doctors who are not arrogant but who are fallible and patients whose astuteness, awareness, and experience are valuable but limited collaborate as best they can. In the past we deferred too much to doctors and didn’t question them as much as we should have, but now–at least on social media where the tendency to echo one another is so powerful–I get the sense that it’s some patients who claim something like infallibility for themselves. Happy to hear if you disagree.

  3. Rob Murray

    PHAC, Health Canada, CIHR and AMMI [Canada] speak with one voice on the Lyme disease issue and do whatever their U.S. sister organization tells them to do. Patients and their experts are siloed and serve as window dressing when all important decisions are made without transparency or collaboration behind closed doors. They handed the $4 million for research back to the status quo researchers and public health officials responsible for the situation. No matter how great the problem there never is money for basic research. We need a seat at the table where decisions are made. Everyone who spoke or wrote about the Conference to Develop a Federal Framework on Lyme disease was told that their input would be carefully considered. They must have considered it and discarded all of it in its entirety.

    • CB Nelson

      It is so depressing that the Lyme schism still exists 25 plus years after I had to become a “super patient” myself to get the help I needed for my own illness. I really thought ll these years later the truth about how strong the anitbiotics need to be for how long would have become undeniably obvious in thousands of case histories.

      Instead, I count my lucky stars I am symptom free due to some open minded and sympathetic physicians who listened to all the evidence, and read the cites I supplied. But even that took five years and my own ascending paralysis before it was finished.

  4. Rob Murray

    Patient experience and Big Data can be used to solve problems that would be too expensive, slow and not relevant to most people. Gold plated double blind experiments have great limitations when dealing with a heterogeneous population. SEE!
    -MyLymeData2018 Conference: Seeking Cures Together. Johnson LD, Lymedisease.org 18-08-09: https://www.youtube.com/watch?v=I6BrMf3DQvA&t=1503s
    -MyLymeData2017, Lorraine Johnson’s presentation, YouTube, Johnson L, 17-04-21: https://www.youtube.com/watch?v=VegR2RxAdAQ&t=268s

  5. Rob Murray

    HIV is a good example of Institutionalized denial and neglect until they found it could be heterosexual. Many of those with Lyme and tick-borne diseases are researchers, biologists, entomologists and health care providers themselves but PHAC and public health officials won’t talk to any one that doesn’t agree with their dogma. There are almost 13,000 items on Lyme in the PubMed data base. Only 200 or so support the opinions of the medical experts and the remainder paint a completely different picture of the disease. This means that like HIV/ AIDS we are over 30 years behind in research. There have been no advancements in that time and the last government funded research was 15 years ago. Patient powered research may be the only option for those fighting for a diagnosis and their lives.

    • Frank Gavin

      Not my area, Rob, but I don’t think HIV research is “30 years behind”. My understanding, from the drugs we reviewed in The Common Drug Review, is that there have been huge advances in treatments for HIV and they began not long after the virus was identified. My understanding also is that the push by people with HIV, mostly gay men at the time, was powerful.

      • Aurelia

        Just noticed this, Frank, I believe Rob meant that Lyme research is 30 years behind due to bigotry impeding areas of research, similarly to HIV research previously being far behind in research due to bigotry impeding areas of research.
        HIV has caught up now, but if science and health care had recognized their own biases earlier, they could have saved millions of people before it spread so far

  6. Valerie McDonald

    Dear Frank,
    Thank you for reflecting so thoughtfully on the meaning of “expert.” In my experience, the “white coat” experts in health care rarely have a problem acknowledging the limits of their own experience. Today, when I accompanied my father-in-law to see his cardiologist, she ruled out heart problems but noted that his low blood counts might indicate other issues. However, she declined to interpret the results of his recent bone marrow aspirate because it was “not her area of expertise.” She outlined many reasons why it would be inappropriate and possibly even harmful for her to speculate about the results. Instead, she reminded my father-in-law that he was the “expert” on how he was feeling from day to day and encouraged him to contact the hematologist with concerns if his condition deteriorated before his next appointment. I left the meeting feeling that each of us had contributed our own experience and insight, and each had deferred to the expertise of the others. In short, we were a team of equals trying to solve a complex problem.

    • Frank Gavin

      Thank you, Valerie, for reading and responding to the piece. Your account illustrates, among other things, the importance of recognizing, in an explicit way, what others know and what we ourselves don’t know.

  7. Wanita

    Lived experience is too often over looked. Great article. I believe patients should be partners in their care. The paradigm is shifting as patients become more engaged and are self advocating.

    • Frank Gavin

      Thank you, Wanita, for responding. I agree that it’s good the paradigm is shifting. It’s important for all to recognize that self-advocacy and engagement can take many forms. And I know some will, at least for a while, choose not to engage with some institutions or groups or individuals.That’s OK.

  8. .Francesco Palma

    In the UK NIHR use Public Contributor for members of the public on their funding panels and undertaking reviews.
    Time after time with polls undertaken the term patient is preferred to service user in the field of Mental Health.
    I undertook the EPP course some years ago and took the voluntary tutor course More recently undertook a Patient Leader course with Oxford AHSN but you know what I still prefer to be known by my birth name and work collaboratively to work with providers and commissioners to bring about change in service design my experience of co-creating co-design and co-production came years ago in research with the application of PICO methodology personally I would allow the individual to express their preference about how they wish to be known/preferred to the paid professional does not have the same degree of choice.

    • Frank Gavin

      Thank you, Francesco, for sharing that information and those thoughts. I wrote an earlier piece that was partly about changing ideas about what “patient” means and implies: https://healthydebate.ca/opinions/patient-centred-care
      I know some people with mental health conditions who strongly oppose being called “patients” even when they are receiving healthcare services. Others don’t object at all. In healthcare settings I think asking others what they want to be called and telling others what one wants to be called are very important. Some parents of hospitalized children like being called “Dad” or “Mom”; others hate it. There’s a simple solution.

  9. Mary England

    Modern medicine has made amazing advances thanks to the expertise of experts in the field. We all benefit from their years of dedicated study and singular focus. The move to discredit such experts is difficult to understand. Patients’ differing experience of diseases is of interest to such experts and adds to their depth of knowledge. The next patient will be the beneficiary of this pooled knowledge.
    So, of course, I agree with Frank Gavin in this well reasoned article.

    • Frank Gavin

      Thank you for your response, Mary. Your comments made me recall that the people I’ve known or heard about who had the greatest depth of expertise were almost always genuinely humble–perhaps because they were well aware of all they didn’t know. And just to underline a point I hope I made: some patients are experts, but it’s important to be specific about what they are expert about.

  10. Nikki Matthews

    Interesting thoughts
    Being an expert in your experience of your disease is not the same as being an expert in “ the disease” but by the same token the medical practitioner may well be an expert in the disease but can never really understand its impact on your living .It is arrogant of those medical people who think they are .
    One of the basic problems I believe is that in some specialties in particular neurology where during their training such a reliance is placed on the skill of observing the patient . and because observation is the doctors skill and therefore validated by her/him as being reliable and accurate that they often forget that during a consultation is an incredibly short snap shot in time .In some diseases the doctor can never observe the true impact of the disease on the patient.
    Listening to the patient is always going to be less validated by the medical profession because it requires you to trust someone else’s observations or opinions rather than your own.
    Consultant Obstetrician with a progressive debilitating neurological condition who is constantly amazed at how well she functions during her consultation with her neurologist

    • Frank Gavin

      Thanks for your thoughts, Nikki. I think the arrogance of “medical people” that you speak of, which just about everyone has experienced at least once, is one reason many people feel they have to assert that they too possess expertise. I was also struck by your comment about the value of listening–really listening–to the patient. It must be more than a hundred years ago the William Osler said (in an era before pronoun change) “Listen to the patient and he will tell you the diagnosis.”

      Still, I remain skeptical that the expert/expertise frame is the best one to describe what patients know about their experience of a particular condition or combination of conditions. I’ve heard many patients say they are experts about their own bodies, but I keep being surprised by mine and never feel I have the detachment or objectivity expertise demands to examine or assess all or part of my body in the way an expert would. That is not to say I don’t know things about my experience of a condition or about a subtle change in sensation or about some effective way I have of, say, dealing with pain that no doctor would know and that he or she would–or should–find it useful for me to tell him or her, but I just don’t think labeling that knowledge as expertise or myself as expert makes sense.

  11. Ted Lo

    The question is not whether the patient possess knowledge of his or her often unique experience, but whether it is used with the professionals in the management of his condition. Having the title of ‘expert’ is empty in a system that systematically values standards established by the professionals more than the individual experience of the patients.

    • Frank Gavin

      Thanks for your response, Ted. I agree with you about what the question is not and about the need to value the experience and the experiential knowledge of patients. My view is that addressing that need by insisting all patients are or must be experts is not so helpful.

  12. Susan Inman

    Many thanks to Frank Gavin for this very thoughtful and sensible article.

    The idea of empowering some patients as experts is very problematic when it comes to mental illnesses. People with more mild conditions are told they are experts based on their own experiences. The Mental Health Commission of Canada has built an expanding infrastructure based on this notion in their guidelines for training and supervising peer support workers. Their guidelines don’t require or even suggest that peer training programs teach anything about mental illnesses; in fact, many peers hold the fashionable opinion that mental illnesses aren’t real illnesses. This is becoming a workforce that can undermine medically necessary treatments.

    I discuss these problems in these two articles:

    https://www.huffingtonpost.ca/susan-inman/peer-mental-health-workers_b_9009252.html

    https://thetyee.ca/Opinion/2018/10/25/New-Standards-Fail-Mental-Illnesses/

  13. Philip Woodford

    Im a patient with a long term condition and stroke survivor as well being a healthcare Director. I don’t believe I’m I’m an expert in any other patient experience nor my own. But I do have an insight I can share about my own experiences but it in now way makes me an expert in patient experience.

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