“Ethical implications of engaging patients in research” – keynote at Putting Patients First 2019, BC Support Unit, Vancouver, November 2019

Transcript of my talk delivered at the BC Support Unit’s 2019 conference, Putting Patients First. Vancouver, November 20 2019. Video recording courtesy of BC Support Unit.

Engaging patients in research: it’s what we call a no-brainer, right?  Meaning, it’s something so naturally and obviously required it’s not worth putting energy towards justifying it. When anyone questions whether it should be done or not, people roll their eyes, as if to say: are we still talking about this?! Our common understanding is “of course we need to do it, obviously, now let’s figure out how to do it right.”

I must admit: It’s not entirely obvious to me – and if you’ve followed my work over the past couple of years, you’ll perhaps know that I’ve spent quite a bit of energy trying to understand why it’s seen as obvious. This hasn’t been easy.

Part of the challenge is that ‘engagement’ as not a single, simple thing. Rather, it’s a complex and shape-shifting ecosystem of relationships operating within interconnected organizational structures, applied in a myriad of ways.  This ecosystem has emerged in a particular political, historical and social context.

Typically, when we study patient engagement, we zoom in close. We look at interpersonal dynamics, communication, details such as scheduling and compensation. We see frameworks and programs and quality improvement. And we focus on things we can measure, like outcomes and impact. When we do this, when we zoom in close, we see people working together, often in satisfying ways, collaborating and solving problems.

It’s no wonder this is what we focus on: collaboration is deeply satisfying. So is recognition, validation, inclusion.  I’ve made the mistake of undervaluing how important these things are – they’re the essence of human experience and connection.  And because these feelings are so powerful, they fuel the passion for patient engagement in research.

Engagement has something for everyone. It’s an outlet for volunteerism. It’s an expression of values. For some, it’s a stance against the cold and impersonal biomedical or technocratic model of health research. For researchers too – those who embrace it may feel they are allies in an important movement, one that humanizes medicine and feels professionally and personally fulfilling.

Patient engagement feels like a force of disruption and patient empowerment. At an individual and interpersonal level, this has resonance and is gratifying. It feels true.

My task today is not to invalidate this perspective, but rather to say: okay, and what else might be happening?  If we widen our scope, we can hold more of the phenomenon of patient engagement in view in such a way that we can turn it over, look underneath, perceive it from different sides. When we do this, we have an opportunity to see a multitude of factors at play, some of which are hidden or invisible to those who are embedded in it. We may also see unintended consequences, and broader agendas potentially being served.

That’s what I’d like to do today: zoom out.

Let’s start with some common ground, things we probably agree on:

When we talk about engaging patients in research, we mean patients involved in the research process as partners, whether in literal contractual terms or as an idealized form of collaboration.

(I understand that not everyone likes the term ‘patient partner’ but I’ll be using it today as a shorthand to describe patients in roles other than as subject or participant. I will also use the term ‘patient leader’ to describe patient partners who are involved in the development of patient engagement approaches and programs.)

Ideally, patient partners work with researchers to co-produce research – their insights and contributions are (ideally) seen as having equal value to the knowledge and skills of the researchers.  Patient partners and researchers may have different roles and may be involved at different stages – typically, patient partners are not functioning as scientists – more commonly they are involved in the planning, management and administration of the research project. Regardless of the tasks, in an ideal model of patient partnership, the work and contribution of patients and researchers have equal status, and recognition of the work is shared.

We may also agree that patient engagement in research is a disruption of the traditional model of health research. It comprises a significant change of role for both patients and researchers, and it’s a lot for researchers (in particular) to get their heads around. Whether it’s a welcome change or not, it’s certainly a paradigm shift. And with that comes growing pains, things to sort out.

We all know what those things are:

  • Compensation or remuneration
  • Authorship
  • Representativeness
  • Roles and definitions
  • Patient preferences, in terms of how they want to engage
  • to name a few

Questions of responsibility, authority, roles – all of this naturally needs to be negotiated. These terms of engagement are important, because they reflect whether and how work is valued. Few would want to dedicate time to a project for which there won’t be some kind of return – whether it’s monetary, in the form of appreciation, or in the satisfaction of making a difference.

These kinds of topics overwhelmingly occupy the current canon of literature about patient engagement in research. Maybe that makes sense: if, generally, the feeling is that we’re beyond the more basic questions of why and what for, then these administrative questions of how come in to sharper relief, and allow people to focus on improvement.

Now here’s where I may be leaving our common ground and heading down a different path:  I don’t think focusing on tactics is enough. And in fact, this close-up study of the administration of patient engagement keeps us so busy we often fail to see some of the broader issues. So zooming out, broadening our scope, may be a useful (if uncomfortable) exercise.

Last year, around this time, I delivered a keynote address at the Cochrane Colloquium in Edinburgh Scotland. (In fact, it was that very talk that landed me an invitation to speak here today!)

I delivered what can best be described as a manifesto, and outlined several aspects of patient engagement that I think are hard to see when immersed in the tasks of engaging.

In that talk, I wondered if engaging patients is essentially virtue-signalling – making institutions look good while keeping patients busy with essentially unimpactful or inconsequential busywork. I proposed that engaging patients as partners is fundamentally changing what research is, impacting and changing in unpredictable ways the very methodology and protocols that distinguish research from opinion. I thought about the vulnerability of patients and lack of good facilitation in potentially sensitive or triggering settings; I questioned why there was no requirement for reflexivity or analysis concerning engagement encounters; and I pondered the simplistic, uncritical “happy path” that research about engagement takes, with its focus on process, improvement, and personal satisfaction.

It was an intentionally provocative talk and one that indeed ruffled a few feathers. In the end, I implored researchers to protest the imposition of patient engagement when it simply doesn’t make any sense. I invited patients to reconsider whether it was worth their time. A rich discussion ensued – in person, via email, and at subsequent events. I had unintentionally made myself a lightning rod and I got to hear first hand some of the sentiments my talk provoked.

Here’s what I learned from researchers:

Many were flummoxed by the increasing pressure to include patients in research projects, and felt they had no one with whom to discuss their discomforts lest they be seen as difficult, or worse: inflexible or old-fashioned. They felt it was a disruptive requirement that was not simple to meet, nor did it come with sufficient explanation or justification. They didn’t know how to engage patients in ways that would be satisfying for patients and also support project momentum – which is made more frustrating by not fully knowing why.

Evidence base in the literature has never been strong, and it was unclear to some what problem ‘patient engagement’ was solving. So understandably, some researchers felt uneasy about injecting untrained human catalysts into a well-established protocol, in what they saw as an experimental fashion.

This creates an interesting tension because the ‘no-brainer’ sentiment was never about evidence. Rather, I think what we mean by ‘of course we need to include patients’ is that there is a case to be made for a moral imperative. Patients, this argument goes, should have a voice not only with respect to research priorities, but also research process. Using language borrowed from disability rights activism, the refrain ‘nothing about us without us’ is a compelling justification.

It’s a sentiment that has emotional resonance – many researchers I spoke to do indeed feel it makes sense to involve patients who have a meaningful connection to a particular research topic. But then: why partners? What exactly is this leap from helpful participant or informant or interlocutor, to ‘partner’? Some researchers feel they were already listening to patients, already learning from their clinical experience, already conferring with patients about their priorities, interests, and preferences. For those who engage in community participatory action research, there’s a clear understanding of what issues are being addressed, and for whose benefit the research is being done. In the context of patient-oriented research programs, what is this partnership thing, and what does it accomplish in the interest of research?

I also heard from researchers who saw patient engagement as an exciting opportunity – they not only saw material value in patient input and support at various phases of the project, but they welcomed the opportunity for personal connection with patients, and appreciated the insight and experience of their patient partners. They felt there was much they could learn and the partner model seemed a good next step.

The response to my talk from patients was a bit more one-sided.

I actually didn’t hear much from those who disagreed with me – at least not directly!  My interpretation of this is that engaged patients by and large are passionate, dedicated, focused on growth and improvement –my message just isn’t useful when there’s so much work to do and more ground to cover. Fair enough.

I did hear from one particular patient partner who told me he resented the implication that patients had been hoodwinked somehow, or that they were being taken advantage of. And I understand that – many patients are indeed firmly in the driver’s seat of their own engagement experiences and are understandably protective of their work. Direct comments to me like this were rare, although I suspect the sentiments are not.

So likely due to the nature of self-selection, I heard mostly from patients who felt that my talk had given voice to their own misgivings. They had indeed experienced poorly facilitated projects, unprofessional communication, what they described as bullying from fellow patients. Some had questions about the value and appreciation of their work, expressing frustration at tokenism and feeling utilized primarily for their status as a patient and not for their unique insights, sensing they were interchangeable and expendable. Interestingly, the ages-old concern of engaging patients just to ‘check a box’ seems to be increasing, now that engagement is becoming more broadly mandated in order for projects to access funding and publication (whether a requirement is stated explicitly or not). While this check-box was surely put in place with good intentions, perhaps an unintended consequence is that it breeds suspicion.

I came away from these discussions appreciating the varied feelings and impressions of both patient partners and researchers.  

I also noted a distinct common thread throughout all of these conversations: it was that despite their complaints, patients and researchers remain committed, and have a very high tolerance for flux, figuring things out as they go. There was an embrace of imperfection, and in some cases an explicit rejection of what’s considered a traditional, scientific, biomedical model of established research methodology. There was a relish in shaking things up.

I felt I was hearing an origin story being delivered in real time. What I heard over and over again is that patient engagement is still new. It’s finding its legs. We have to give it time. We’re still working it out. We need to keep iterating, or refining.  Perhaps this why some people find what I say kind of irritating – it’s too soon to poke holes because it’s not ready yet.

I sensed a belief in engagement as a cause – a belief that health research has a moral imperative to include patients. It’s old fashioned to believe otherwise, and it’s up to all involved to keep working on improvement.

And indeed, people are dedicated to toiling at this issue. Researchers are increasingly accepting of the fact that they need to get on board. Even in these short months since Edinburgh those mixed feelings are shifting to acceptance, a willingness to get on with things, and an acknowledgement that patient engagement is obviously here to stay.

This, in turn, seems to have heartened patients. Patients are organizing, developing communities of practice. There are calls not only for improvement but for expansion – to be included in all aspects of a project, at all levels of government and institutions.  Patient leaders demand to attend even the most technical of professional or business meetings. Networks of patient-partners are producing their own frameworks, they are publishing guidelines about compensation, attribution, and other terms of engagement. Individual patients are signing up for training and certification, and supporting each other to become more effective at the work. In social media there’s a growing call-out culture, with patients chastising conference organizers for not being ‘Patients Included.’ It’s impressive, the amount of dedication and work.

I’m currently on my second paid consulting project with the Ontario SPOR Support Unit, and I can honestly say that I have never worked with a group of people who are so thoroughly invested in their work, who listen actively in every conversation and who are keen to keep dialogue moving forward. Sure, there are tensions and disagreements and some typical group dynamics, but that’s to be expected. I’ve worked quite a bit with both business and healthcare groups in my own consulting practice, and I have never seen corporate or hospital employees so engaged and curious in their meetings and activities.

The passion of patient partners has ratcheted up to such an extent that my calls last year to stop, or slow things down, now seem naïve and endearingly quaint.

Patient engagement in all areas of healthcare is a real juggernaut, building momentum and developing at a rapid pace.

To keep up, healthcare organizations develop programs and policies, hire engagement professionals, and figure out how to systemically include patients as part of their quality and improvement practices. To do this, it seems that healthcare organizations are borrowing from the business world’s playbook of co-design, collaboration, and innovation approaches.

As our universal healthcare system edges towards becoming a two-tiered or multi-tiered system, subject to market forces and erosion through privatization, it makes sense that a consumer logic takes over, that we draw on ideas from business, and that patients want a direct say in how things are done.

Patients have inserted themselves into the running of our public institutions because in many cases their trust in experts is diminished. Now of course this isn’t the only thing that’s true: many patients engage specifically in research because of their intellectual curiosity, because they want to volunteer or give back. Perhaps they want to find a community of peers, and contribute to something important to themselves.

But in reality, all of this could be done on an individual basis – I know researchers and patients alike who have been collaborating and learning from each other for decades, long before the term ‘patient engagement’ was coined. But I sense there’s something bigger going on.

When patient partners, and especially patient leaders, push for ‘partnership’, this suggests to me that they feel their healthcare interests are not being properly addressed by elected politicians, bureaucrats, administrators, or medical experts. The solution, it seems, is for individual patient experience and insight to be counted as expertise on par with those who have undergone professional or academic training. The notion of ‘partnership’ appeals to a sense of equality.

Using the language of activists, patient leaders talk of disruption, taking a rightful seat at the table. Invoking ‘patient’ as though it’s an oppressed identity. I sense, in other words, a movement of sorts, aiming to upend established practice in health research.

And now: now that we see organizations actively collaborating or partnering with patients on a systemic level, and funding bodies requiring patients be involved in the research process – it gives the impression that there’s a groundswell of patient-led momentum that is working. For the patient engagement movement, this feels like a win. There’s a sense of storming the gates, of ensuring the out of touch establishment begins to take into account the will of the people. Am I overstating things?  I don’t think so: I hear time and again – from patient partners – that scientists, researchers, and academics are out of touch. In their ivory towers. Not connected with the real-world needs of patients. And they need to learn to give up some control.

I realize this perspective is not shared by all patient partners. As we look through this wider lens, we necessarily must defocus from individual viewpoints and feelings and instead contemplate broader patterns and trends. From this vantage point we might ask: is it a win? Have patients gained something meaningful?

Well, it’s hard to say. Indeed, patients are in spaces they weren’t in before and participating in activities that were previously closed off or didn’t exist. But we don’t know for sure that this is better for all patients. We don’t know for sure that the research process has been improved or by what measure. Thus far, we haven’t needed evidence because it’s seen as a no-brainer.  When we talk about the moral imperative to include patients, saying ‘evidence’ in the same breath can be almost heretical. The demands of patient partners and leaders extend to, and seem to stop at, inclusion. Having a voice, a seat at the table – to augment or counter the traditional biomedical emphasis of health research.  For the patient engagement movement, this seems to be the unifying cause.

The full health research enterprise as we commonly understand it, is not limited to only the pure scientific tasks of data collection and analysis. It also includes all the surrounding activities and structures, such as methodology, priority setting, allocation of funding, academic credentials of our scientists and researchers, incorporating human experience through qualitative research – public trust in research is earned because of its well-documented and time-tested approaches.

As a society, we have a common understanding about what it is our assigned experts know, and what they’re doing, and what they are responsible for – which is: the full spectrum of bench to bedside activities, executed with consistency, methodological rigour and integrity, and some cases, reflexivity.

By shoe-horning patients into the health research process in the way we are doing – which is essentially through trial and error, focused on individual experiences, with a quality improvement mindset – we are shifting the core tenets of research from evidence and methodology to the more business and consumerist approaches of collaboration and co-design. This shift will have consequences we can’t fully anticipate.

Patient partners may feel they have accomplished a win – and in some respects, maybe they have. But there are others who are winning, too: politicians who want healthcare operations to be run more like businesses; businesses who want patients to talk and behave more like customers; administrators who want health service delivery to be more efficient and economical, even profitable.

Institutions and governments do well by seizing or creating opportunities to appeal to populism – that is: hooking into sentiments that our ‘so-called experts’ are out of touch. They invite patients in for a chance to collaborate and influence in ways that don’t actually cost them anything in real terms, and use phrases like ‘relevance’ and ‘putting patients first’. Feels emotionally resonant but doesn’t carry substance. It’s the language of business combined with a common sense appeal – paving the way for unknown changes to come.

And what about the ‘experts,’ the scientists and researchers and academics, the ones we feel need to be coached on making their work ‘relevant’? The ones who may be feeling squeezed and criticized? We might reserve some sympathy for them. From their perspective it may seem as though a coalition is forming to redefine and even limit their role – a coalition that’s made up of business-minded institutions, a bevy of engagement professionals, and now, recruited into the cause: passionate patient partners.

We patients are the most difficult, unpredictable, and expensive aspect of our healthcare system – we’re a messy bunch – the last thing that those in change want is loud protest or a list of demands. Things go more smoothly when patients are ‘happy customers.’

So perhaps that’s the reason why there is a laissez-faire approach towards the implementation of patient engagement. For bureaucrats and administrators, the details don’t actually matter.  What matters is only that patients have somewhere to bring their energies.

Some patients who become patient partners are already happy customers – they volunteer because they want to express appreciation or gratitude. But just as many, if not more, have stories of wrongdoing, injustice, negligence, structural and interpersonal bias and discrimination. All of these patient experiences, which fuel our passion for making a difference – get channeled into patient engagement. I’m not just talking figuratively: patients with complaints are eventually referred to participate in engagement activities. It’s an effective way to contain and rally patients, get them pulling in the same direction. It doesn’t have to be perfect – the imperfection keeps people busy, working out the kinks. While engagement overall functions as a lubricant.

It’s a perfect vehicle for turning discontent into productive alliance. And as long as it always feels new and evolving and there is tolerance for lack of structure and no specific list of demands from a unified patient voice, no one need be held accountable for how it’s implemented or for what’s delivered. No one need be responsible for tracking incidents of patient harm. No need to determine whether patient engagement is in fact further entrenching bias and privilege rather than remediating it.

I’m holding the phenomenon of patient engagement at a certain angle, at a certain distance, in a particular light. When viewed through this frame, we can see it is indeed a disruption to health research but perhaps it’s not exactly a disruption caused by patients. Institutions and government – those in power – recruit patients and foster allegiance. In fact, we are all here today because the federal government, through the provincial support units, arranged it.

This ‘so-called’ disruption is orchestrated from within, by invitation, to shore up support for orienting research towards relevance and efficiency, possibly compromising the integrity of research as we know it.  “Relevance and efficiency” – to me, this doesn’t sound like the language of activists. This sounds like the language of a business-minded government looking to rein in unruly or unpredictable elements.

‘Patient engagement’ channels patient passion and even activism into a productive and supportive institutional program – one in which the enterprise of health research is constrained and made to bend to market forces. The inclusion of patients helps to validate this strategic direction.

Perhaps these are, indeed, early days. But I am reluctant to agree with those who say that it’s too soon to be critical. My concern is that, years from now, we may look back and see that ‘patient engagement’ helped to justify a broader shift towards a market-based model of health care and health research, while stifling researcher creativity and independence, impacting people well beyond this community of patient partners.

While we’re here, crafting the origin story. . .  perhaps now is the time to start thinking about what outcome patients actually want.


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