Considering patient engagement as ideology

My skepticism about patient engagement* does not actually stem from lack of evidence about whether it’s beneficial in some way(s). On the contrary, I think evidence could readily be found to support a thesis that says when like-minded people get together and discuss ways of improving things, good can come of it. I have no argument against the idea that patients, having had healthcare experiences and perhaps strong opinions about them, would have something to contribute to improving services or facilities. My contention in this regard, rather, is that this type of research about patient engagement – research that measures outcomes – is noticeably missing in a field that likes to measure things. Healthcare doesn’t invest in it and, frankly, I think it pretends to be confused about how it might go about conducting research about patient engagement impact. 

But, the reasons for this confusion – and the motivations for perpetuating it– would be an interesting vector for study. Who gains what by not conducting research, or by ignoring existing research? Why is there a loud call for research but so few are doing it? Who decides the terms of whatever false scarcity we are forced to abide by? It’s a chicken-and-egg problem – no money, no research, no money, around and around. Lack of research is often blamed for under-funding of patient engagement imperatives, such as increased diversity – so there’s little investment made. It’s a curious situation; surely there is a way to connect the dots, to explain all of this. Unfortunately, return-on-investment (ROI) studies won’t reveal much. 

By asking these questions I am not, even in the slightest way, suggesting that we need patient engagement or that we ought to primarily seek to improve it. I am only pointing out that lack of the very kind of research that healthcare is so good at underscores how little basis there is for patient engagement in the first place. So while lack of research contributes to my skepticism, it is certainly not the cause. My skepticism stems from something much deeper. 

On twitter, at conferences, in private conversations, in blog comments – talk of patient engagement easily slips into talk of something else, such as the importance of patient experience, or use of patient stories, or how doctors should do more listening. There is no one thing. There is no collection of things. It’s everything and nothing. Patient engagement seems to be more like a state of mind. Yet, there are calls for more. To do it better. To engage patients at all levels. To be meaningful. Conversation in every forum inevitably turns to some variation of ‘how do we get everyone to include patients in everything’. I feel like a spoilsport but the truth of the matter is I really don’t grasp what this is all about. I don’t sense much beyond platitudes, hopes and dreams, beliefs and myths.

So where to go with this? I’m frequently on the verge of giving up – why try to ruin something that people obviously care so much about? It’s not hurting anyone, is it? Well, I’m not so sure, which is what keeps me going. Especially as I consider a different line of thinking: patient engagement as ideology.

For quick definitions of ideology: Wikipedia has a good summary, as does this short essay, which includes this concise definition from Terry Eagleton:

Ideology is a system of concepts and views which serves to make sense of the world while obscuring the social interests that are expressed therein, and by its completeness and relative internal consistency tends to form a closed system and maintain itself in the face of contradictory or inconsistent experience. 

Perhaps this is where my thinking has been headed all along. My view on patient engagement is that it’s a tightly knit, internally coherent, rigourously defended collection of stories and beliefs about patients and healthcare working together in harmony. It’s a vision of patients as empowered, valued participants and institutions as eager learners, prepared to listen and act. Whether those beliefs are rooted in something real hardly matters, partially evidenced by the lack of interest in research about patient engagement – even as it relates to something as tangible as outcomes. A coherent origin story is hard to come by. There is little underpinning it but a feeling of good will. People are committed to an imagined ideal centred around principles that resist specificity: partnership, collaboration, meaningfulness. It’s hard to argue with these goals, isn’t it? Partly because these goals are virtuous, and also because people take it so personally. Case in point: I attended a day-long workshop last week where one of my tablemates literally stormed out of the proceedings because our table dared to talk about (among other things) ways in which the contribution of patient advisors might not be terribly meaningful.

So how does one study ideology? Or, if you don’t want to call it that, how can we frame the study of patient engagement around these principles that are held so dear? Research in this space needs to be qualitative, observational, nuanced. For example, people say they are partners, but do their interactions demonstrate this? A process is said to be collaborative, but is collaboration taking place? Patients say they know if their participation is meaningful – perhaps it is to themselves, but is it also meaningful to the organization, or to other non-engaged patients? Can we trust ourselves to report on the ‘effectiveness’ of what are essentially deeply-held beliefs? What would an observer notice that we ourselves are unable to?

While of course real activities are taking place – meetings, conversations, projects, proposals – I think the ‘specialness’ of patient engagement that blankets these exchanges exists largely in the realm of the imaginary. When I say we should ‘research patient engagement’ I don’t mean we need to calculate some sort of return on investment.  What I mean is we should investigate the extent to which reality and this patient engagement imaginary/fantasy agree or disagree. We should be concerned and curious about how existing context and conditions such as power dynamics, economic realities, and identity politics influence thinking and behaviour when patients and organizations come together in the name of patient engagement. We should keenly observe interactions to see whose agenda gets subsumed and whose prevails. Is patient engagement more than wishful thinking? Is there a there there?


I have been pleased to discover lately a small but mighty collection of social science research that looks at patient engagement practice in various contexts and forms, and troubles some of the same questions I have been asking. I will be summarizing some of them on my blog. The first one will be this compelling study, if you care to read ahead.

Engagement of patients and the public in NHS sustainability and transformation: an ethnographic study

Pam Carter, University of Leicester
Graham Martin, University of Leicester


* As with all my posts about patient engagement, when I say “patient engagement” I am referring to programmatic, organizational initiatives carried out within the walls of healthcare institutions. I am not referring to the idea of involving patients more fully in their own care. At times when I am referring to patient engagement in research, I will expressly say so.




  1. Thank you thank you for these perfectly reasonable reflections – no need for sane people to storm out of anywhere. I’m listening. And thinking. And wondering – is patient and family engagement in research the same or different as regards your line of questioning. I care because I’m involved in research projects in which I have a role in decision-making. We are keeping track of my and other family members’ contributions, but not measuring them (because we have no control study of course).

    • Hi Donna! The research context is different in many ways, including the motivations of those involved, and funding sources and expectations. But, given that humans are involved, working together, negotiating for space/influence/resources, navigating power dynamics, probably communicating poorly, hiding or ignoring problematic issues – my vote is yes, the questions are the same. There is much more than meets the eye, and more than the individuals involved can reasonably account for. The ‘machine’ of academic research and publishing has long been a site of critical focus for its role in generating and gatekeeping knowledge (among other critiques) – the purpose and effects of the addition of patient contributors, however enthuasiastic they may be, should be examined.

  2. Hi Jennifer – it doesn’t sound like anyone has done an external objective evaluation of what happens in PE when patients are at odds with a hospital agenda while sitting at the same ‘collaborative’ table. I’d love to see you design a study.

    • Hi Louise! If I knew how to design a study and could find someone to pay me for it, I’d be all in :)

      I think in order to catch a moment when people are odds, a researcher would have to be there already, observing/participating in a longer process. However if a group of patients *started out* at odds, as in making demands or being otherwise confrontational, I doubt it would be part of a ‘patient engagement’ program but would rather be an issues-based negotiation.

  3. “Patient Engagment” is a step in “Experience Design Methodology”. In Ontario, organizations like the Change Foundation and Health Quality Ontario zeroed in on this step leading to redesign and turned it into one of the “buzz-words du jour”. The Minister of Health and the Ministry hyped the grow of jobs with titles like VP Patient Engagement, Director of Patient Engagement and Manager of Patient Engagement by empty-headed CEO who want to appear like they are in compliance with the directions of people with the authority to make up the buzz-words du hour.

    This is a sad story that has severely harmed progress on improving the patient experience. Who are the “bad guys”? The silly bureaucrats who rule by buzz-words or the CEOs who are so focused on the appearance of compliance that they actually advance such unproductive activities.

    Visit TedBall.com to see how “Patient Experience Design Methodology” works, and the place of the step called “Patient Engagement” in the redesign metrology.

  4. Hi again, I just re-read this today and here are my recent (changed) thoughts about this. A plethora of new research in patient engagement has come out recently. But I feel that the new research is way ahead of the barriers to proper engagement (ie. engaging the full range of patients and families, not just the uni educated rich folks). Because the research institutions are still way behind the times in compensating patients and families properly. Even the most forward thinking research teams apologize constantly for the snail speed of compensating out of pocket expenses and there are so many ‘research rules’ that exclude the full paid partnership of non-academics. So, I think it’s about money (isn’t everything?). But with the body of new research, the institutions might be forced to actually catch up. Are you hopeful? I hope you are because I am out of pocket big time for expenses LOL.

    • Lol well for your sake, I will keep my fingers crossed :) The money issue is an important (but small) part of the whole equation as it of course speaks to equity (getting paid for work when everyone else is) – but also, that money has to be demanded or even requested makes me question the intentions of those who control the budgets. So I’m still stuck on more fundamental questions of purpose and outcomes.

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