Rosamund Snow: What makes a real patient?

rosamund_snowA few years ago I applied for a grant to study my own long term condition. I started out as Ms Snow, ashamed of saying the name of my disease, and ended up Dr Snow, the type 1 diabetic, knowing a lot more about research and academia than I ever thought I would. I realised that patients can see things in research that clinicians can’t because we think to look in new places, and we spot discrepancies that doctors take for granted. I became particularly interested in power relations, and then in the things that stop patients having a say in what gets researched in the first place.

I have taken part as a patient in many “patient and public involvement” (PPI) groups. As I changed who I was (from Ms to Dr), I noticed an odd phenomenon. People stopped being sure whether I was a “real” patient.

Until recently, according to the National Institute of Health Research (NIHR), having a doctorate automatically banned me from being part of their PPI reference groups. That was particularly ironic for me, because it was the NIHR that funded me to become a service-user researcher in the first place. The NIHR’s Evaluation, Trials and Studies Coordinating Centre (NETSCC) has now reconsidered this policy for future recruitment rounds, but the policy has not yet been changed NIHR-wide. It is still a very familiar concern.

Is it a legitimate concern? Why else might organisations like the NIHR want the pre-doctorate me, but not the post-doctorate me?

Theory 1: Real patients aren’t supposed to have knowledge

As Ms Snow, I didn’t know much about academia. I knew about living with type 1 diabetes, and had already spotted that much of the research in diabetes is based on flawed assumptions, but I didn’t really know how to argue that point. As Dr Snow, I know what a p value is. I know who Foucault and Bourdieu were. I have dug into those flawed assumptions and shaky evidence base for some of the statements made about diabetes, and I can confidently argue those points with anyone. I don’t give up as easily as I did when I was Ms Snow; I have the same passion, but I get less frustrated, because now I have the tools to fight my corner. This is in fact the complete opposite from the assumptions the NIHR is making about people like me. Meanwhile, in some organisations, PPI groups are forced to change personnel every couple of years. It’s hard not to be cynical about these policies. Is it because if we know stuff, we can argue back?

Theory 2: Real patients don’t have the ability to acquire knowledge

From throw away comments by researchers and clinicians, I suspect real patients are supposed to be a bit gormless. I’ve sat on a lot of PPI groups where healthy researchers provide the structure of the meeting and offer round the biscuits, and the patients provide the naivety. These are the groups where we end up “commenting on lay summaries” rather than having any useful input on research questions and outcomes. We’re allowed to remind the researchers why they went into the job in the first place, but we’re not supposed to be able to comment on methodology, even if the methodology is flawed because the researchers aren’t aware of their own biases.

Theory 3: Real patients need protecting from academics

At first glance this seems the least unpleasant of the theories: a fear that academics saying “we’re all patients really” would drown out the non-academic patients. I find it nearly as creepy as the other theories, because it gives an uncomfortable insight into the lack of thinking behind their PPI strategy. When people want me to be a patient on a PPI group I always ask “why are you asking me?” If you want “a patient,” I may not be the best person, because it will depend on what you are looking at. I can’t comment on, for example, what it’s like to use palliative care services or what it’s like to be a patient who can’t read or write. If that’s what you want, go and find the right patient. If I have specific experiences that would give you an insight, I’m happy to help. But if you already have an academic with equally relevant lived experience, and she’s willing to use that experience, is it really out of the question to ask her? Note the emphasis – that researcher has to be willing. Having a disease can be considered a conflict of interest or a source of bias by those who don’t really understand subjectivity and bias. Those who start off as academics also have to make the uncomfortable move from identifying as “Dr X, the ordinary researcher” to “Dr X, who is going to use his life experience (even his vulnerabilities) to make this research more relevant and effective.” Very few traditional academics I’ve met are willing to do this; but service-user researchers do it all the time.

Perhaps I must just be content with the fact that as far as some academics are concerned, the moment I got through my final exams, I stopped being “real.”

I wish someone would tell my pancreas, mind you. I still don’t seem to be cured.

Rosamund Snow, patient editor, The BMJ. Twitter: @BMJPatientEd

Competing interests: See Rosamund’s editorial staff page.

  • Congratulations on your doctorate and on an excellent post that makes extremely pertinent points I completely agree with. There is not only this patient-researcher/doctor demarcation but also something similar in many cases between patients and ‘healthy’ medical charity staff too.
    Not only this but often patients and carers are expected to give their lived-experience views as volunteers and are usually the only unpaid people in the room. Now, it’s more common to get expenses paid but if patient views and their time were also valued in financial terms – even in a token way – they may suddenly be taken a lot more seriously!

  • Bishan25

    This is a fascinating article to note the different opinions of academics towards patients without academic qualification and with. Thank you for sharing your experiences and story!

    When I read this as I could help but reflect on the parallel better patient/academic and Doctor / patient roles. Let me expand on this. To me being a doctor patient has quite a different flavour. It is more than the sum of two equal parts, perhaps?

    I was initially a doctor without any personal experience of being a patient, but my two hospital encounters – for severe pneumonia and later a near drowning gave me quite a different perspective and appreciation of the patient role. Also having family members go through the health care system has a big impact.

    I can see how it is quite tempting to put patients on a different (albeit well positioned) platform in order to deliver care, but it useful to also be able to understand them (at least in so far as we understand ourselves), which is perhaps a prerequisite for empathy- a quality of doctoring that is increasingly being desired.

    What does having first hand experience of the other role confer in the Doctor patient relationship? Perhaps as for you, being Ms/Dr Snow, I found being the person whose life was saved in an emergency situation, gave me first hand experience of the the work that happens on the other side of the equation, that is, by the people working in systems set to deliver emergency care.

    It gave me a powerful understanding of both roles in a way that perhaps is not easily predicted or quantified.

    I guess it’s all food for thought, and on that note your article was a wonderful feast. Thanks again 🙂

    Best wishes
    (Here I’m speaking to you patient to patient- I wouldn’t be as comfortable being so informal when writing as an academic- perhaps? 😉 – that’s my emoticon for giggle)

    Cheers
    Bishan 🙂

    Ps as far as hospitals go- I think everyone who works in one should try being a patient (and I’m not the only one who feels this way. I saw the following slide from a talk by an intensivist who had indeed been a patient ; and the experience had changed his perspectives also.

    (https://bishansworld.wordpress.com/2016/06/24/smaccdub-critical-care-and-beyond/)

  • This is so true, Tania. I was once invited to speak to a group of Health Ministry employees to offer the “patient perspective” on a patient engagement project they’d already essentially finished. I looked around that lovely boardroom luncheon spread and realized that all but one had been flown in from out of town regional offices the night before, stayed at nice hotels, eaten at nice restaurants, just to attend this meeting and be able to check off the #PatientsIncluded tickbox. Not only was I the only person attending who wasn’t being paid, it was my tax dollars helping to pay for their attendance!

  • rc00001

    Sorry I’m joining this so late, thanks for all your thoughts and insights, those who commented also!

    And to go further into the “we’re all patients really” remark is that I find it, as a patient and patient rep, as a way of disagreeing with something I say, that some non-patient who in fact is representing another “sector” or stakeholder wants to underline the value of their (dubious) point by saying “wait a minute. Aren’t we really all patients? And my point as a pharma person or as any other collaborator should not be overridden by your thoughts just because you are a patient.” Oww! I have been there more than once!

    Another worry I have is being agenda-ised by another stakeholder group, consultants or whoever. To wit, a private and privately-funded group gets a working team together (with or w/o patients or many patients) to define or redefine important issues like definitions of patient engagement or patient centricity or patient involvement. Should I sign on to something that I have no control over (I really didn’t work on the design of the question, the investigation into that q, the analysis of the results, or the dissemination of same)? I think not, and I think now that patient involvement as a term is becoming so mainstreamed, patients are in danger of being coddled, with perhaps decent intentions, but with really no say in the matter. I was always taught that if we can’t be part of making the agenda, we don’t take part (the phrase “nothing about us without us” really works).

    And does someone who is “out” as a patient in a pharma company or other stakeholder really represent the “patients view”, esp if they are in medicines development or marketing or any other part of the job where they weren’t hired and aren’t being paid as a patient rep but now hold that title (I guess it’s like an honorary doctorate, can be pretty meaningless). Or someone who has started a non-profit (or for-profit) “advocacy” group on the importance of patients, are they really speaking first and foremost as a patient or do they have other possibly conflicting interests (like getting paid…)