Patient engagement – a collection of themes and critical thoughts

There’s so much to consider about Patient Engagement – I have no fewer than 10 half-written blog posts waiting in the wings. One of the reasons I haven’t finished any of them is because many of the themes are interconnected. If I write about one thing I inevitably have to write about every thing. Which of course is impossible. So, here’s my growing laundry list of themes and pressing questions – hopefully this will help keep me organized:

Approaches to engaging patients: where to begin?

Patient Engagement philosophy requires that patients are engaged on principle. This means that patients are assembled first, then the organization figures out what to do with them. I’m still unclear as to why this is the first principle, and also unclear why patients would willingly participate under these nebulous pretenses. I recently proposed elsewhere that engaging patients should be a purpose-driven activity in the first place. If you can’t answer “what for,” don’t do it.  This goes for both patients and healthcare professionals.

Definition of patient engagement

We say ‘Patient Engagement’ but we’re not all talking about the same thing. I think there are important distinctions to be made when Patient Engagement is invoked in different spaces, whether self-care, clinical care, community health, operational/organizational spaces, policy development, training and professional development, research, to name a few. Broad discussions of the value of Patient Engagement are not as productive as when discussion is focused on specific spaces, about specific groups of stakeholders. Public discourse, in my opinion, is not specific or nuanced enough. For example: a goal of patient empowerment in one space doesn’t make sense in another; payment for participation is offensive to some patient populations, mandatory for others; some groups are deeply distrustful and fearful of healthcare, others are grateful fans. It’s not possible to broadly discuss approaches, frameworks, or best practices without knowing which spaces and stakeholders we’re talking about.

The framework problem

When engagement or participation frameworks are presented as progressive continuums (example) with graphic representation of a progression through stages, it’s easy to assume that more is better, that progressive movement along the continuum is necessary, that we ought to be striving for empowerment or partnership, always. Is that reasonable? Is partnership always the goal? Should anything less be deemed ‘tokenistic’? Who decides what level of engagement is suitable, or sufficient? Frameworks, in this respect, can do a disservice if we’re not clear about what sort of Patient Engagement we’re talking about.

Who is the ‘engaged patient’?

Consider how different patients are from each other. Then consider what percentage of the patient population is ‘engaged.’ How much care is taken to determine how those precious few seats are filled? Consider:

  • Motivations: Are they pleasant middle-class volunteers, happy to help out? Are they marginalized people who want an equal seat at the table? Are they wronged individuals who want to prevent future mistakes? Are they from a patient group that demands action because of historical and ongoing mistreatment?
  • Obligations: Does the organization owe something to patients? Are there matters of redress, of compensation, of apology? Are some patients consistently left out and even though they are not asking for anything, it is time to seek them out and listen? Who are these patients and where are they?
  • Representativeness: Is it important? Do you need ‘one of each’? Why or why not? Do engaged patients speak on behalf of others? Do those ‘others’ agree to be represented by the chosen person?

Again, different reasons for patient engagement call for different sorts of engaged patients.

Terms of engagement

Compensation, location and timing, expectations, communications and feedback – who sets the terms, and on what basis? I argue that without first determining specific reasons to engage patients for specific initiatives, these questions cannot be answered satisfactorily. If there is no reason for engagement other than engagement for its own sake, there is likely no accountability, no need to satisfy expectations, no reason to pay people or report back to them. The location and timing of meetings can happen as the organization sees fit; those who show up are the ones for whom there are no barriers, and few will notice who’s missing.

Whose initiative is it?

I argue that Patient Engagement is not a patient movement. Patient Engagement occurs only according to the needs and interests of the organization. Yes, many patients are also interested and request to be involved. Indeed, some patients report personal or therapeutic benefit from being involved. Some patients even seek credentials to insert themselves seamlessly as engaged patients. All of this serves Patient Engagement well. But don’t be fooled: for the most part, patients serve at the pleasure of the institution. Certainly when they are contributing and helping. But also when they are complaining. Also when they are pointing out problems. Also when they are grievously wronged then sponsored to share their stories.

Of course, patients can and should contribute as they like. When they do, I encourage all of us to keep in mind: who is primarily benefiting from most PE initiatives? Whose reputation is riding on the visibility of PE initiatives? Who is performing the (free) labour to make that happen?

What difference does it make?

Of course patient input helps to improve aspects of the patient experience. Despite any impression I may have left to the contrary, I do believe this is true. Patients know what they’ve been through and have valuable insights and feedback.  If you want to solve a problem or address an issue or generally make a process go more smoothly for patients – involve a patient. I’m not confused about whether patients have something valuable to contribute to improving healthcare service delivery. I wonder instead about Patient Engagement as an organizational program, which staffs PE professionals (including people with lived experience), puts patients on admin or operations committees (e.g. patient safety, recruiting, general advisory committees), recruits patients as on-demand resources for internal departments, trains and socializes patients to act appropriately in organizational contexts and align themselves to the corporate mission (example), then markets itself relentlessly. What if patients weren’t ‘engaged’ programmatically, and instead, appropriate project teams (which, yes, may include patients) carried on the boring business of tried-and-true research, user experience design, quality assurance, stakeholder consultation, and agile development? What would be the difference? Does anyone actually know?

In the absence of evidence supporting Patient Engagement, let’s wonder about other motivations. Virtue signalling certainly makes the list. We can also consider how including patients helps to authorize institutional activities, possibly preempting suspicion, dissent, or complaint. Perhaps it provides a kind of pre-authorized absolution. I attended a Patients Included conference not long ago and was dismayed at how a patient panelist was included in an inappropriate and disrespectful fashion. I don’t know to what extent their Patients Included status made the organizers immune to criticism (not from me, I gave feedback), but the conference certainly got a lot of mileage out of their Patients Included status, and that status did not protect a patient from (what I thought was) mistreatment.

What do patients want from Patient Engagement?

Patients with individual complaints or issues can take them directly to the institution, or even to court – these are dealt with (or settled) case-by-case, and some play out publicly in the media. Organized patient groups advocate for specific action: funding, access to treatment, service quality, justice – they confront healthcare and government for all of the ways they get things wrong. 

And then there’s Patient Engagement. I see lots of advocacy online and at conferences among patients and caregivers, demanding more and better Patient Engagement. What, however, is the underlying cause we are rallying around? Is there one? If not, shouldn’t there be? Is Patient Engagement on its own a relevant thing we should be demanding? If so, why? As I’ve argued here and elsewhere, I think it suits organizations just fine to enrol patients in this way – it’s hardly a radical demand, especially when engaged patients and healthcare seem to agree on so much. (This is just a guess, but I don’t imagine that truly troublesome patient activists call themselves ‘engaged patients.’)

Despite current dissatisfaction (see #hownottodoptengagement on twitter – also, this helpful spreadsheet compiled by @brynphd), I imagine healthcare will eventually find a way to get better at ‘doing’ Patient Engagement, and engaged patients will claim victory when that happens. But again, I ask, to what end? Patient Engagement primarily serves the interests of the institution.  There is something worrisome about patients themselves adopting the exact same language as healthcare, seeking validation through professionalization and certification, and advocating for terms that in the end won’t cause healthcare to even break a sweat. 

Someone asked me just yesterday, what’s the alternative? My answer remains, I don’t know. But asking these uncomfortable questions about Patient Engagement seems like a good place to start.



    • Oh gosh – I guess I have my work cut out for me :) Thanks for commenting!

  1. Always thought provoking. Just when I think I have it all figured out, you challenge me to switch gears.

  2. Patient engagement at the organisational level not sure is really doing any good because of multiple reasons some of which you mentioned here and other blogs. Once a patient is engaged at the organisational level the patient become “one of them” (for the many reasons you have already mentioned several times) therefore, is no longer “patient engagement”. Many organisations do have patient engagement in place yet the patients remains to be “less” than the service providers. I believe patient engagement at an individual level is an alternative we systemically should explore, aspire, and work towards at all institutional levels. Until then, I believe we are just feeding the same archaic model of service with tokenism.

    • Thanks for your comment Liliana! I’m curious to hear more about what you mean by “patient engagement at an individual level” and also how we explore this systemically?

    • Just looked at the abstract – really interesting!! I’ll dig it up and read – thanks so much for reference.

  3. Even before we try to define what “patient engagement” is and isn’t, we should think carefully about how “patient” has become an identify in ways it rarely, if ever, was until quite recently. Not long ago people with serious chronic or acute conditions thought of themselves as patients only in very well-defined situations, e.g “I am a patient of Dr. X” or “I was a patient in Hospital Y when I had surgery for Z.” Now some definitions of “patient” (such as CIHR’s) make just about everyone a patient, but these very broad definitions are partly responsible for attempts to identify “real patients” or create hierarchies or classes of patients. One consequence–and there are many–is that attempts to engage patients or to engage organizations as a patient often wind up angering, excluding, or confusing someone or indeed many people.

    I suggest we think what assumptions we have when we call ourselves or others patients. Do we, for instance, assume that being a patient means one necessarily has some particular expertise? Do we assume it means one has increased moral authority or added insight when assessing or commenting on some aspect of healthcare? And do we assume it’s an identity that can or cannot be challenged once someone decides to accept it? (We know there are many people who have used the healthcare system who reject the label, some of whom also don’t identify themselves as “people with lived experience”–as if there were any other kind of experience!)

    It may not go far in addressing the issues you helpfully comment upon, Jennifer, but it might help a bit if we were to talk more of patient and public participation or involvement–”engagement” also has problems–and of “patients and other citizens,” which reminds us all that patients are never just patients.

    I hope all this doesn’t seem off-topic.

    • Yes, excellent considerations Frank. I think you’re asking us to consider not only ‘what is a patient’, but also ‘why patients’, which I agree are questions worth scrutinizing.

      Some initial musings:

      I use the term ‘patient engagement’ as it’s what’s used ubiquitously in Canada by the institution (and commonly by patients), whereas PPI (patient and public involvement) as you know is used more widely elsewhere, where these initiatives are more mature. I too find our phrase both troubling and amusing but haven’t wondered about a name change – largely because I see it as an institutional initiative, and that’s what they call it. If I say ‘patient engagement’ I remind myself I’m referring to something specific and programmatic. But I can also see that people might not want to be ‘engaged patients’ after all, but rather people involved in something they care about, for whatever reason.

      Regarding the term patient: ‘Patients and other citizens’ still requires us to pick which we are, to self-identify as a patient or other (what is a patient? what is that other?), and suggests (insists?) that all patients are citizens, or think of themselves as such. Do only citizens become patients? Citizens of where? Does it matter? How are patienthood (patientdom?) and citizenship related? ‘Citizen’ introduces another layer of complexity, I think, and reinforces the notion of ‘patient’ as an identity, not just a role we occasionally play (some for longer than others) – which I think has interesting implications.

      • Thanks, Jennifer. I should have been clearer about “citizens.” I didn’t mean it to be about a particular legal status, e.g. “citizen of Canada,” but to emphasize or just recognize our and others’ identities as members of a society, even if newly arrived.

        One of the areas where this is particularly important is in the allocation of limited resources–and there is no health system with unlimited resources. I think that even when people are most in need of health services they–at least most of the time–understand that the needs of others, including people they’ve never met, may and should limit the extent to which they draw upon the resources we all depend upon. If I think of myself as above all else a patient, I may think I am entitled to anything and everything I, in my elevated status, or someone else who says he or she has my best interest in mind) thinks necessary or desirable. But I’m convinced we also care about others. Maybe we can call them “citizens of the world.”

        • And one other thing before I shut up … The more we think of ourselves primarily as patients the more we may be inclined to think that healthcare trumps everything else–education, housing, transportation, the environment, etc. In the long run, of course, all these have a great bearing on health, but that’s less clear if you’re thinking in terms of “patients first.” Interestingly, lots of studies show that when healthcare spending goes up, spending on public health almost always goes down.

          None of this is to deny the importance of providing good health services expeditiously to people who need them. I and others in my family have been on too-long waiting lists. But I am still uneasy about some (not all) of the consequences of patient-centredness.

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