“The trouble with patient and public involvement (PPI)” – keynote at Cochrane Colloquium 2018

Transcript of my talk delivered at the 2018 Cochrane Colloquium, Edinburgh, September 18 2018. Illustrations by Tom Bailey.

 

 

I’m going to use the term “patient engagement” because it’s more familiar to me as a Canadian than the term “public and patient involvement”, or PPI, which is used here in the UK. While there are indeed differences in the ways we engage patients, there is much that is similar, given we both have publicly-funded healthcare systems, with well-established programs of patient involvement.

Allow me to offer a generic definition:  patient engagement, or, as I’ll sometimes call it, the patient engagement enterprise, is the overarching government or institutional agenda of recruiting and engaging patients in activities that previously would have been conducted exclusively by staff and professionals. Activities may include service planning, operations streamlining, human resources selection, quality and safety improvement, professional education, and partnering in health research. I know these are all distinct activities each with its own characteristics and issues. However, my focus today is broad enough to encompass most of it – and the distinctions are becoming blurred as patients become involved in multiple areas. In Canada’s research and teaching hospitals, the activities are often intertwined.

I don’t know the origin story of today’s patient engagement enterprise – I don’t know who named it, or who the first volunteer was, or where the first advisory committee convened. But I’m fairly certain that patients didn’t invent it. Patients were not wandering around looking to form committees or give helpful advice to researchers. Patient engagement, as a program, is defined, implemented, and managed by institutions, not by patients.

Grassroots patient-led movements look a lot different – consider mental health activism, disability rights, disease-specific patient groups (unless funded by pharma) – these are areas where stigma, neglect, abuse, inequality, lack of accessibility and other injustices are being actively fought against by affected patients and their allies – the mantra ‘nothing about us without us’ has particular weight. People in patient-led movements are activists demanding specific change, whether legal, medical, or social. They do not call themselves “engaged patients”.

In patient engagement, it’s unclear to me what it is patients demand. As far as I can tell the primary demand, if there is one, is for more ‘patient engagement’. To be fair, I think of this as a kind of shorthand. Patients want to feel seen and heard, to know what’s going on, and to feel they can give input. They may have had especially good healthcare experiences or especially bad ones – but either way they feel they have gained important insights which healthcare can learn from.

I was recently commissioned by the Ontario SPOR Support Unit for Canada’s Strategy for Patient Oriented Research, or SPOR – to study patient views on patient engagement frameworks. For this study, I interviewed patients who were involved in research as patient partners – and one of the things that stood out was the diversity of patient motives, preferences, and intentions. Clearly there is no single unified patient voice. Yet within that diversity, there was commonality – engaged patients gain considerable personal fulfillment on a number of levels. (Johannesen, 2018)

So engaged patients may not have specific demands the way patient activists do. Rather, becoming an engaged patient appears to be a way to do something instrumental with our healthcare experiences – much like I am doing here today. It’s a positive and constructive activity.

This may sound like an obvious and organic way for patient engagement to be. But it’s not – it’s intentionally set up that way. The patient engagement enterprise was not created for activists. On the contrary, institutions don’t open their doors to protest, they don’t appreciate when people speak truth to power, they don’t want to be held to account.  In fact patient engagement neutralizes or prevents this kind of friction through sophisticated mechanisms of management, communication, and control. In the patient engagement enterprise, institutions – not patients – create the conditions, frame the questions, select and socialize new recruits, and decide who gets heard and who gets ignored.

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It is within this environment that patients are invited to ‘engage.’ Newly engaged patients often start out feeling like a fish out of water and look for cues as to how to be useful and how to blend in – veteran patients and engagement staff are happy to help integrate new members through a number of socialization mechanisms.

Here’s a specific example of how it works: The University Health Network or UHN in Toronto is comprised of several hospitals and a learning institute, and, like other large institutions, they operate a Patient Partners Program. This is from their website:

“The Patient Partners Program recruits, selects, orients, and provides skill-building for UHN patients and caregivers, in order to contribute to important hospital planning and decision-making activities.”

They then go on to describe the tasks of the patient partner, which include contributing to patient and staff safety, organizational change and transformation, and helping staff improve care and service. Expectations of the participants include committing to UHN’s declaration of values, getting support from staff to ensure patients are well prepared to contribute to meetings, and staying focused on project goals and objectives as provided.

What’s not written here, but can be inferred, is that only certain types of patients need participate. Patients who come with specific complaints and so-called axes to grind – who vocally advocate for change that is not already on the institution’s agenda – they would likely feel unwelcome. Interestingly, rejection or exclusion would most likely come from fellow patients, not patient engagement staff.

I will admit to a guilty pleasure of occasionally watching the reality TV show called The Bachelor. I’m sure no one here has ever seen it! Inevitably, every season, a contestant will complain that a fellow cast member is “not here for the right reasons”. Engaged patients say the same thing. They can have a short fuse for patients who are not seen to be helpful, or who slow things down, or who have “an agenda”. I find this a bit ironic, because one of the stated goals of patient engagement is to hear from a diversity of patients – which presumably includes a diversity of opinions and priorities.  Yet the intensive socializing of engaged patients at institutions like UHN encourages engaged patients to be on their best behaviour and to root out their own bad apples.

Engaged patients themselves are among the biggest proponents of patient engagement – they appear to be more certain of the benefits than anyone, and really believe they are working to improve healthcare for everyone. But I wonder, who is included in “everyone”? As we call out lack of diversity and advocate for some measure of representativeness – we conveniently, entirely ignore the people that mainstream healthcare has already shut out.

I recently produced a short film on behalf of a group of peer support workers in a harm reduction hepatitis-c treatment program in the inner city of Toronto. These peer support workers were graduates of the program – they’d received hep-c treatment – and with the support of their harm reduction program, they remain drug users with a focus on safe consumption. They’d undergone peer support training, and were now leading groups and workshops. One day I mentioned “patient engagement” and one of them asked me, what is that? When I described it, some of them literally laughed out loud.

Their radars are finely tuned to institutional efforts that claim to do one thing but really do another. They imagined the well-meaning volunteer patients at advisory meetings and, to them, it just seemed like another mechanism of exclusion.

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But these tensions are rarely – if ever, discussed in mainstream research about patient engagement. They’re not usually brought to our attention – how patients adopt institutional goals, how some patients are edged out, how whole swaths of the patient population are excluded. Most research about patient engagement takes what I call the happy path. Which means we study the patients who are already engaged, see how they feel about their experience, maybe report on the ‘impact’ of patient engagement – although the definition of impact can be slippery. This kind of research is typically authored by patient engagement practitioners – perhaps together with engaged patients – or by academics who are embedded in teaching hospitals or other healthcare institutions.

(Examples of this kind of research: Finney Rutten et al., 2015; Ruco & Nichol, 2016; Bombak & Hanson, 2017; Hamilton et al., 2018; Armstrong, Mullins, Gronseth, & Gagliardi, 2018; Kiran, Davie, & MacLeod, 2018.)

Here are some of the things we have learned from this kind of research: people like working together. Free patient labour is helpful. Patient insights are useful. Hearing or telling patient stories is emotionally rewarding. Research results are more understandable to the public when patients write the reports. The list goes on.

This is all good news (I guess) and completely unsurprising. The patient engagement enterprise is a carefully manufactured ecosystem that makes complete internal sense. It has its own logic that is consistent and coherent, and its own body of research to prove that it’s working. I have written about this elsewhere as a type of ideology. I can see how it’s easy to get swept up in the excitement – it feels good to be involved, there’s a sense of making a difference, it even feels righteous.

But there is a whole other body of work that attempts to understand the political and social forces that shape today’s patient engagement enterprise. This research comes from social scientists, critical theorists, scholars in the humanities.

This work excites me because it explains so much about what makes me uneasy about patient engagement. Themes include power dynamics, identity politics, how patients are socialized to adopt institutional agendas as their own, how patient activism is co-opted by institutions. It shows how engaged patients are sequestered in administrative silos, and it shows how the “theatre” of patient engagement doesn’t necessarily mean that anything of consequence is happening.

(Examples of this kind of research: Kerr, Cunningham-Burley, & Tutton, 2007; Gibson, Britten, & Lynch, 2012; Ives, Damery, & Redwod, 2013; Carter & Martin, 2017; Madden & Speed, 2017)

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Surely this kind of research should also influence how practitioners go about the everyday business of patient engagement. However this does not seem to be the case.

Perhaps one of the problems is that social science research tends to be undervalued when compared to clinical research. Or maybe popular support for patient engagement is so strong, no one has time to think about things like patients as neoliberal subjects (for example Glasdam, Oeye, & Thrysoee, 2015), or the ways institutions exert control through surveillance and bureaucracy (for example Murray, 2009).

Those of us who have feelings of un-ease or who sense the overarching difficulties raised by the social sciences might deal with the conundrums by simply ignoring them and pressing on. Awareness of these issues gives way to the more immediate practical problems, which include questions of diversity, representativeness, compensation, and tokenism.

These practical considerations can be addressed as procedural questions and are, for all intents and purposes solvable – or at least, negotiable. Successfully addressing practical problems reassures us that we are being organizationally effective. Which can feel satisfying – yet for some, the underlying uneasiness remains.

But ultimately, intentionally or unintentionally, we are distracted from a possible deeper and arguably more insidious problem, namely: that the patient engagement enterprise affects our understanding of what we are doing when we are “doing research”. It potentially changes the way we think about what research fundamentally is.  I’d like to outline a couple of examples to show what I mean by that.

On one level, the patient engagement enterprise effectively slows research down– even prevents it – not necessarily because individual patients interfere in research but because it creates administrative speedbumps or barriers. Ask any engaged patient who has been around a while and they will have a story or two about being asked to sign what is essentially a permission form – a letter submitted by a researcher to a funder, where a patient, any patient, has said “yes this research is relevant.”  This sort of paperwork task represents a relatively minor hurdle – more challenging is when a researcher needs to assemble a patient advisory committee even before they can write the grant, or even begin to formulate the research questions.

As an extreme example: Some children’s rehabilitation centres in Canada have formed child or youth councils who are asked to weigh in on research projects before they are submitted to the research ethics board. In this case researchers make presentations to the children and youth councils, with some having eligible members as young as 3 years old.

Whatever you might make of this, surely we can agree that when patient engagement is deployed in a blunt or sweeping fashion, it limits the type and scope of research projects, and impacts the pace at which they can proceed.

On a deeper level, there are more concerning indications of how our notions of research are shifting as a result of patient engagement.

Research projects are characterized by having a defined scope, transparent methodology, ethical considerations, and a rigorous, systematic approach to investigation. This is what differentiates research from opinion or speculation or preference. Something surely gets lost when we ignore this distinction.

I recently met a methodologist on a project whose goal was to develop clinical guidelines for cancer screening. As part of this project they wanted to find out what risk thresholds were acceptable to patients. In this case, it was shown that patients whose test results displayed particular markers for cancer, if referred for further testing, may discover their risk of cancer had decreased dramatically. The question was, was the decrease of risk enough, in the minds of patients, to support adding this additional test to clinical guidelines. To find out, the methodologist wanted to survey a cross-section of patients. Instead, the project team decided to simply ask the 2 patients already on their advisory committee. At the next project meeting, they were asked their opinions, and the team carried on.

I don’t know how or whether the project team in this case reflected on the role of engaged patients, or wondered what they would have learned had they conducted the survey, or whether they contemplated how the engaged patients’ answers might have compared to a wider sample. I do know they considered it a successful project.

But regardless of how they felt about the project, we should be troubled by stories like this.

By replacing methodologically sound, peer-reviewed qualitative research with patient engagement we lose the requirement of transparency in terms of how ideas are generated or what researchers take from the interactions, the process of which is not subject to analysis.

 It also means that “investigators” might conduct their “research” in a roomful of supporters, or even enthusiasts – who may be indifferent to or unaware of norms of criticality and objectivity. This is the path of least resistance for research – the overwhelming temptation is to take it.

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“Patient engagement” seems to be a phenomenon mostly in countries like Canada and the UK, where we have publicly-funded healthcare systems. Perhaps it addresses a gap that a market-based system already knows how to fill. The prevailing assumption here is that even if patients can’t vote with their dollars (or pounds) they ought to still be able to influence how healthcare is delivered (Tritter & McCallum, 2006). In theory this should be handled through a democratic election process – we vote for the people who will give us the healthcare we want. But of course this only works if our representatives do the things they say they will do, and develop policy based on the needs of the people they represent. Policies in this context are put into practice by experts, who are government or institutional employees.

Patients, often rightfully, feel their needs are not adequately addressed by this process. And as a result, what constitutes expertise becomes heavily contested – not just between experts and patients, but also amongst experts, and amongst patients. There are clashes between expertise and experience. Training and common sense. What counts as knowledge and what is mere opinion. These questions are far from settled, and may suggest a growing populism among patients.

(For a robust discussion on populism in this context, see Speed & Mannion, 2017 and Taggart, 2017.)

At the same time, scientists increasingly have to make a case for basing conclusions on research evidence rather than anecdote. And they have to compete with each other for scarce research funds, as investment priorities are directed and redirected from one field to another, one research area to another, one project to another. 

In the midst of these struggles the patient engagement enterprise blossoms and flourishes. It relieves a lot of pressures. Patients feel they are being heard, researchers who cooperate are more likely to get grants, and governments and institutions have an easy way to advertise that they are involving patients –  whether that involvement is meaningful or not (I have written about this elsewhere as virtue signalling – here and here). And through all of this, the patient engagement enterprise takes credit for showing commitment to ideals of popular representation.

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As a critic of patient engagement, I occupy an ambiguous space. I stand here critiquing patient engagement, but I am evidently also participating in it. I privately wonder about the value of the Patients Included mandate, yet I realize I am likely here, at least in part, because of it.

I do enjoy the irony – but I also feel uneasy about my role as resident critic. One reason for my uneasiness is that I’m saying radical things like Patient Engagement is Virtue-Signaling and Ideology to an audience fully immersed in, and likely enthusiastic about, patient engagement or PPI. While I stand behind these ideas, I realize I haven’t given you any options.

I’m tempted to be helpful and constructive, because as an engaged patient that’s how I’ve been socialized. In the past I made recommendations – key takeaways for today’s busy patient engagement practitioner. But I regret doing so, because when I provide implementation suggestions it implicates me as a supporter of the whole patient engagement enterprise.

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So: with no recommendations for improving patient engagement, what are we left with?

I think that programmatic, institution-sponsored patient engagement needs to end – because it allows institutions to monopolize dialogue and constrain the topics that can be discussed. It should end because it turns patients into enthusiastic participants in institutional agendas that may work against their interests. It should end because when implemented mindlessly across the board it interferes with how research is conducted. It should end because there is plenty of literature to suggest it is not what it seems, that calls into question whether the patient engagement enterprise is actually serving patients.

I suspect, however, the demise of patient engagement is not imminent. So for now:

Researchers should say no, or protest loudly, when the requirement for patient engagement risks compromising the integrity of their work. By all means, do the things you have to do in order to access funding and conduct your research. But resist, as much as possible, getting swept up in populist enthusiasm for patient engagement.

Patients should stop, or at least resist, participating in the patient engagement enterprise. Drop the word “engaged”. Stop calling for more patient engagement. Patients would be better served by getting clear on exactly what changes they want from healthcare service delivery and health research. We’ve convinced ourselves that patients should not have agendas of their own – but they should. Of course they should. Because without an agenda, patients risk simply becoming volunteer healthcare workers and volunteer research assistants – not effecting desired change but instead, reinforcing business as usual.

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References

Armstrong, M. J., Mullins, C. D., Gronseth, G. S., & Gagliardi, A. R. (2018). Impact of patient involvement on clinical practice guideline development: a parallel group study. Implementation Science, 13(1), 55. https://doi.org/10.1186/s13012-018-0745-6

Bombak, A. E., & Hanson, H. M. (2017). A Critical Discussion of Patient Engagement in Research. Journal of Patient-Centered Research and Reviews, 4(1), 39–41. https://doi.org/10.17294/2330-0698.1273

Carter, P., & Martin, G. (2017). Engagement of patients and the public in NHS sustainability and transformation: An ethnographic study. Critical Social Policy, 026101831774938. https://doi.org/10.1177/0261018317749387

Finney Rutten, L. J., Morris, M. A., Schrader, L. M., Manemann, S. M., Pathak, J., Dimler, R., & Roger, V. L. (2015). Approaching patient engagement in research: what do patients with cardiovascular disease think? Patient Preference and Adherence, 9, 1061–1064. https://doi.org/10.2147/PPA.S84980

Gibson, A., Britten, N., & Lynch, J. (2012). Theoretical directions for an emancipatory concept of patient and public involvement. Health, 16(5), 531–547. https://doi.org/10.1177/1363459312438563

Glasdam, S., Oeye, C., & Thrysoee, L. (2015). Patients’ participation in decision-making in the medical field–’projectification’ of patients in a neoliberal framed healthcare system. Nursing Philosophy: An International Journal for Healthcare Professionals, 16(4), 226–238. https://doi.org/10.1111/nup.12092

Hamilton, C. B., Hoens, A. M., Backman, C. L., McKinnon, A. M., McQuitty, S., English, K., & Li, L. C. (2018). An empirically based conceptual framework for fostering meaningful patient engagement in research. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 21(1), 396–406. https://doi.org/10.1111/hex.12635

Ives, J., Damery, S., & Redwod, S. (2013). PPI, paradoxes and Plato: who’s sailing the ship? Journal of Medical Ethics, 39(3), 181–185. https://doi.org/10.1136/medethics-2011-100150

Johannesen, J. (2018). Patient Views on “Ladders of Engagement”. Toronto: Ontario SPOR Support Unit.

Kerr, A., Cunningham-Burley, S., & Tutton, R. (2007). Shifting Subject Positions: Experts and Lay People in Public Dialogue. Social Studies of Science, 37(3), 385–411. https://doi.org/10.1177/0306312706068492

Kiran, T., Davie, S., & MacLeod, P. (2018). Citizen Engagement in Primary Care. The Annals of Family Medicine, 16(2), 175–175. https://doi.org/10.1370/afm.2185

Madden, M., & Speed, E. (2017). Beware Zombies and Unicorns: Toward Critical Patient and Public Involvement in Health Research in a Neoliberal Context. Frontiers in Sociology, 2. https://doi.org/10.3389/fsoc.2017.00007

Murray, S. J. (2009). The Perils of Scientific Obedience: Bioethics under the Spectre of Biofascism. In S. J. Murray & D. Holmes (Eds.), Critical Interventions in the Ethics of Healthcare: Challenging the Principle of Autonomy in Bioethics (1 edition, pp. 97–113). Farnham, England?; Burlington, VT: Routledge.

Ruco, A., & Nichol, K. (2016). Patient Engagement in Research and Innovation: A New Framework. Journal of Medical Imaging and Radiation Sciences, 47(4), 290–293. https://doi.org/10.1016/j.jmir.2016.10.008

Speed, E., & Mannion, R. (2017). The Rise of Post-truth Populism in Pluralist Liberal Democracies: Challenges for Health Policy. International Journal of Health Policy and Management, 6(5), 249–251. https://doi.org/10.15171/ijhpm.2017.19

Taggart, D. (2017). Community Psychology as a Process of Citizen Participation in Health Policy Comment on “The Rise of Post-truth Populism in Pluralist Liberal Democracies: Challenges for Health Policy.” International Journal of Health Policy and Management, 7(2), 180–182. https://doi.org/10.15171/ijhpm.2017.72

Tritter, J. Q., & McCallum, A. (2006). The snakes and ladders of user involvement: Moving beyond Arnstein. Health Policy, 76(2), 156–168. https://doi.org/10.1016/j.healthpol.2005.05.008