The following is the text for a talk I gave last week in Montréal, during the Canadian Family Advisory Network session at the CAPHC conference.
I’m Jennifer Johannesen. Some of you may know I wrote a book called No Ordinary Boy.
I used to say it was about my son Owen, who passed away about 7 years ago now, when he was 12. But it really wasn’t about him – the book was more about me, and my own experiences parenting a child with severe disabilities. In the book I process the relentless decision-making, worries and absurdities that came with the territory. Since then, I have been interested in exploring critical issues in healthcare, particularly related to children and families in the clinical setting. And as part of that exploration, I recently completed a Masters in Bioethics.
Last year, I gave a lecture at the University of Toronto. It was a wide-ranging critique of patient and family centred care, through the lens of someone, who, like many of you, experienced those efforts as a caregiver and family member.
I had a lot to say about how efforts to ‘centre on families’ can be poorly considered, leaving some families left out, and confused as to how they got there. In healthcare, the wheels can turn so smoothly and slowly that if you’re not paying close attention, you may arrive at a place you didn’t anticipate.
And I also had a lot to say about how families like mine, who are Canadian born, middle class and English speaking – may experience these efforts differently than others, who may be more likely to be perceived as difficult.
One of my observations about this state of affairs – in which healthcare providers are earnest and caring, and families are exhausted and grateful – was that can be hard to complain, or to specify problems or discomforts when they arise.
The main point was this: whether intentional or not, patient and family-centred care efforts support institutions to manage patients and their behaviour in ways that are acceptable to the institution, and shape their experience in a way that minimizes conflict.
And this is where we arrive at today’s talk.
Here is the question I want to explore: to what extent does patient and family engagement also support these efforts of managing patients, and minimizing conflict? To get to an answer, we need to ask questions beyond ‘how do we do it right’.
We also need to ask: Why do we do it at all?
Let’s clarify something before I continue: patient engagement is a very broad term. It can mean ‘patients engaged in their own healthcare’. It can simply be another term for qualitative research, where patients are part of a focus group, for example. Sometimes it means being part of a group of volunteers who carry out social or supportive roles.
For our purposes today, when I refer to patient and family engagement – which I’ll sometimes shorten to ‘patient engagement’, I’m referring to the range of activities initiated by an institution where patients and families are enrolled in some kind of advisory or decision-making capacity, or where they are asked to become patient leaders, working with other patients.
I want to be clear: I’m supportive of the work provided by patients and families – I think it’s critical that we’re involved at every level of the healthcare institution. This talk today is certainly not meant as a condemnation of the whole enterprise. On the contrary – I think if we take a serious look at it, and contemplate the power dynamics and motivations, we can see opportunities to make that engagement more meaningful.
If you’ve heard me speak before, you’ll know I always implore physicians and healthcare providers to think about their work critically. So today I ask us to do the same.
Let’s start with this fundamental question:
Why do institutions want to engage patients?
1. Regulatory requirements
It’s an obvious answer – Institutions need to meet regulatory requirements or achieve accreditation, or meet a funder’s criteria, or satisfy public demand. While it’s not exactly law, at some level institutions are told they have to engage patients – so now institutions are trying to figure out how to go about it right – with some doing better than others. Regardless of whether the requirement comes from a regulator, a funder, or from the management team, patient engagement is seen as mandatory.
But this answer essentially amounts to “we need to do it because we need to do it” – which is unsatisfying. Just because something is required doesn’t make the rationale for it self-evident. We’ll need to dig deeper to get at why it’s required.
2. Good business sense
So let’s try another obvious answer: it makes good business sense. Some parts of our healthcare system are genuinely interested in finding out what patients think and what they want, which is relatively new in the history of western medicine. And we know this from consumer marketing: if you’re providing a service, regardless of the industry, you need to understand your market.
In the case of healthcare, your patient. This idea is hardly ground-breaking – qualitative research has been around a long time, and approaches such as co-design have become popular methods for innovation.
This answer still doesn’t explain why institutions have embraced having patients on advisory councils and as patient leaders – these are not things we generally do in the private sector in the name of servicing customers.
3. Good feelings
This is maybe getting closer to a truth.
When people say that patient engagement ‘works’, the claim is made as though it’s obvious as to why. But let’s get specific: works to do what? How is it beneficial? What difference does it make? In terms of benefits to the institution, not a lot has been proven in the literature – as far as I know, there is a lack of substantial evidence to support why institutions have so vocally committed to the idea.
What we do know is that patient engagement activities help patients feel they have a voice. They feel they are being included. They feel empowered. There’s absolutely nothing wrong with this – but notice that it’s not the institution we’re talking about. They are already empowered.
So again, back to this question, why do institutions want to engage patients? What do they have to gain? Why is it important for them that patients feel empowered – when there is limited evidence to substantiate that patients indeed have more power. And I have not seen any evidence to suggest that institutions want to relinquish power.
4. “Virtue signalling”
My theory is that the institution gets a considerable amount of mileage from something known as ‘virtue signalling’. This notion originated in evolutionary biology but it’s recently been popularized in the media and used in social commentary.
“Virtue signalling is the conspicuous expression of moral values done primarily with the intent of enhancing standing within a social group.”
Let’s see how this could apply to patient engagement.
When an institution engages patients and families, they communicate it – excitedly and extensively. When you spend any period of time in a hospital, it’s generally clear what efforts would be considered “patient engagement” efforts – whether it’s a function sponsored by a parent advisory, or a pamphlet developed ‘by patients for patients’, or a poster displaying the patient engagement policy – in fact this very conference has a ‘patients included’ checkmark on all its materials – patient engagement is worth significantly more to the institution or organization when its presence is communicated widely. This benefit accrues to the institution regardless of impact, regardless of whether there were improvements to medical care or service delivery. The ‘conspicuous expression’ is clear to see.
There is indeed a moral value associated with patient engagement, which is why I think we’re so quick to extoll its virtues without having to be specific. The actual value may vary: it conveys benevolence, or open-mindedness, or fairness, collaborative-ness – fill in the blank. It is a shorthand for ‘we care about our patients’, but there is not need to substantiate how that actually converts to outcomes.
“intent to enhance standing”
Now, is there intent to enhance standing…? I would not claim that ‘healthcare’ has a will that expresses itself in such intentional ways. Or that there is a puppet master somewhere pulling all the strings. But, let’s acknowledge what’s plain to see. The presence of patient engagement – the conspicuous expression of its moral value – certainly does enhance standing among management and institutions and regulators – and, of course, among patients – especially among those of us who are specially selected to participate. More on that later.
I want to emphasize that I don’t think this is intentional, and doesn’t mean that good things aren’t happening. I’ll give you an example:
I recently learned of a family advisory group that revised some patient intake forms – I think this isn’t uncommon – the forms ultimately were made more accessible and relevant. I don’t know the details, but it doesn’t matter – it was a good project and I’m sure it was beneficial.
But consider this: In any other context, the people tasked with revising the forms would have reviewed the forms, improved the forms, replaced the forms. However, in this case, it was also proposed that every such form should have a stamp on it, to show that it had been vetted and approved by the family advisory group.
I don’t have any particular problem with this – in fact my first reaction was to be impressed. But, like many of us, I was holding the benefits to be self-evident. Let’s think about this a bit more:
- It was not enough to review and approve the forms.
- It was not enough to make the forms better.
- It was not enough that the forms should just make their way into the waiting area and quietly do the work they’re supposed to do.
It was important to show the forms had been reviewed by patients. Why…? Because it promotes instant legitimacy – for the form, and for the advisory group. The form could have been made worse. It wouldn’t have mattered.
Again, not intentional: but it also sends a subtle signal to anyone who might have trouble with the form. It’s an insistent reassurance that may minimize critique. The stamp says: “It’s okay, it’s been reviewed.”
We might ask: so what? If the institution is getting a bit of good will for just showing up, surely that’s okay if what we’re doing is beneficial for patients in the long run, right?
I am aware of many good projects and committees that patient and family groups contribute to, whether as volunteers or advisory members or patient leaders who provide counsel to other patients. I imagine that the vast majority of these efforts have positive outcomes – and this should be no surprise: it’s remarkable what a passionate and dedicated group of people can achieve, when united in a common cause.
But, before we get too comfortable with this idea, I offer some additional food for thought. I want to challenge you to think deeper about why we assume patient engagement ‘works’.
First, let’s talk about the areas in which patient advisors and leaders are involved.
I conducted some informal research, which is to say, I did a bit of googling – and came up with 8 potential areas in which we contribute as patients.
- System design – everything from setting up the LHINs to hospital mergers to how OHIP works
- System navigation – transitions (e.g. hospital to long term care), funding (e.g. equipment support), referrals to specialists
- System operations – workplace health and safety, recruitment, training
- Communications and public relations
- Clinical healthcare delivery – best practices, informed consent, clinical policy, information dissemination
- Research – setting priorities, designing studies, knowledge translation
- Patient experience – food options, signage, personal comfort and privacy, amenities and conveniences, patient communication, peer-to-peer support, patient education
In which category do you think most of the patient engagement and advisory activities happen?
The winner by a landslide is #7 – patient experience. Fundraising is close behind, but that’s usually to operationalize the things the advisors came up with.
A very small handful of institutions lead the way, and include patients at more than one or two levels, but I mostly found patient engagement efforts to be a kind of closed, independent loop, separate from the operational functioning of the institution. Patients helping other patients, and raising funds to support those activities. While patients may feel the benefits, these activities are not central to the functioning of the institution. They are extra-curricular.
We’ve just looked at where patient engagement and advisory is situated within an institution. Next, let’s talk about who is chosen or permitted to take on advisory roles.
There are a few ways in which a patient or family member can become involved. Perhaps she was specially invited or nominated by her own physician. As not everyone is asked, we have to assume there’s some kind of internal selection process for that invitation. Perhaps she was recruited by another patient advisor. Or, patients seek ways to give back, and select projects or committees in which to participate.
In each case though, the patient or family member who ultimately engages at this level has met a vague and unspoken standard of ‘compatibility’. They have determined for themselves, and others have concurred, that they would be a good fit. Often this self-selection leads to the creation of a particularly homogenous group.
I realize that dialogue is taking place in our communities about diversity, and I think these efforts are important. But I offer a caution:
I notice that often the word ‘diversity’ seems to automatically mean gender and especially skin colour. I suppose that’s one way to quantify diversity, but it also, ironically, comes with a set of racist assumptions, as though skin tone can give us clues as to how we’re different from each other.
The homogeneity I’m speaking of is socioeconomic. It’s household income, personal and social conduct, family configuration, communication skills, education, personal beliefs. Of course language. It’s also world view, and how one accepts or rejects the way healthcare is delivered. Skin colour certainly contributes to how a person experiences the world, but it’s not the best way to identify whether a group is in fact diverse, or representative of the patient population.
I facilitated a patient advisory committee recently, for a physician/researcher. The members were invited personally by the physician, to provide input about how to go about establishing a steering committee for a much larger, forthcoming project. The physician told me they were selected because they were smart, were keen to give back, and were also available for daytime meetings. Which in practical terms, also meant they were wealthy, well-educated and unlikely to be disruptive or demanding. Of the 10 people, at least 6 would not be identified as “white” or Caucasian.
One of the questions the physician had of the group was – do you think the future hypothetical steering committee members should be paid, and if so, how much? This is a fun and hotly debated topic, and I was expecting some animated discussion. And it was certainly animated – but not in the way I was expecting.
The overwhelming recommendation of the group was: “no of course not, we would be insulted if you paid us, and we don’t think you can trust someone who is doing it for money.” They eventually came to agree it would be fair to at least cover childcare expenses.
I watched this dialogue unfold with equal parts fascination and horror – the members of this group of seemingly diverse patients were answering honestly from their own perspectives, but their views could not be assumed to be representative of what the broader patient population might think. For them, this was a charitable donation of their time, and it was unthinkable to ask for money. Again, this speaks to where this group was, in socioeconomic terms.
What we’re missing is other kinds of diversity. Have you ever been on a committee alongside a non-English speaker, who needs a translator? How about a recent immigrant? Or a refugee? Or someone who lives in poverty? Or with mental illness? It takes real work and real commitment to locate and support people who live fundamentally different lives than those who currently comprise advisory bodies.
There is also diversity of viewpoint. What about someone who has had a terrible healthcare experience and is angry with how things are? Well, we keep them away, right? These people are dismissed as “having an agenda” – a common expression in our world. I find this both amusing and perplexing – as though none of us have an agenda.
Occasionally, when someone has been deeply wronged by the system and is vocal about it, they may indeed be invited into the inner circle – often in a highly visible role – to provide advisory at the highest levels. Let me be clear – this is important work that may be one of the few real opportunities to effect lasting systemic change. But we need to recognize that the healthcare system gets limitless public relations mileage out of converting opposition into allegiance.
Too often, we, the specially selected group of patient advisors, are treated as though we represent all patients. Not one of us, I don’t think, was elected by patients to represent them – but sometimes a convenient conceptual shift happens, where we go from ‘advisor’ to ‘representative’. This gives the impression of a wider consultative or even democratic process that did not happen. And again, the institution can claim that patients were ‘represented’ in any decision.
Intentionally finding and supporting truly representative patients requires significant outreach. It is time-consuming, expensive, has unpredictable outcomes, and can sometimes feel downright uncomfortable.
But instead, the way we are selected means that the institution is only ever going to hear polite things from nice people, who integrate well socially with clinicians and executives. Who will likely find consensus within a pre-approved boundary. To the institution, we are essentially interchangeable. Sure, there will be interpersonal disagreements and negotiations, but in the end, the work of an advisory body can end up validating business as usual.
Think of it this way: if we are not collectively representative of the patient body, our own experiences can only be counted anecdotally. If we are not representative, what are we there for?
This leads to an important question:
How much does the institution really want us to contribute?
I think this is a complex issue, which contains some uncomfortable contradictions.
When it comes to engaging with our work – I think our fellow healthcare team members, as well as other patients, appreciate the contribution of our time, energy and expertise. I think we have done well interpersonally – we are team-oriented, we give generously, we collaborate productively – and I think that’s well appreciated by those we work with.
But consider this:
Typically, our healthcare system measures everything in sight, and ties these measurements to quality, effectiveness and efficiency. It’s how they understand that something is working. They measure wait times, hand-washing, number of days since a patient fell, number of minutes on hold, how many app downloads.
But interestingly, patient engagement efforts are not measured. Sure, they count number of meetings, and how many patients on a committee – but they don’t measure the impact. They don’t review performance of patient advisors. They don’t set goals and expectations. They don’t pay us as experts even though they like to call us experts. Nobody’s job is riding on whether these initiatives succeed in some way. In fact, it is unclear what success is actually supposed to look like.
‘Patient engagement’ is not subject to the same assessments and measurements used in all other departments throughout the institution.
What should we make of this? Sure, we could say the institution is lazy. Or incompetent. Or forgetful. I don’t think these notions are entirely accurate, or paint the whole picture. I have a teenager at home, and I recognize these symptoms. I think it’s because, deep down, the institution is just not interested.
Here’s how I come to these conclusions:
1. Institutions aren’t interested in patient engagement outcomes.
The institution needs us – not primarily for the work that we do, but for the moral value that our presence represents. If they were interested in knowing the value of patient engagement – if they thought it actually made a real impact on the organization – they would measure it, substantiate it, invest in it.
2. Institutions aren’t interested in sharing power.
If they were interested, they would hire patients in management positions. They would pay us appropriately for our expertise. They would integrate patient advisories at every level of the institution, and patients would be deeply embedded in all processes.
3. Institutions aren’t interested in hearing from all types of patients.
If they were interested, they would see advisories as vehicles for democratic, systemic change. They would spend the time and energy to go into our communities and recruit a representative sample for their advisories. Instead, they are content to stack the deck with ‘the right people’, as a means of manufacturing patient consent and allegiance – our presence is proof of patient consultation while unrepresented populations remain unheard.
My main critique here is not that the institution or the people in charge are bad or malevolent. On the contrary: they want us to gather and think about things and make recommendations. They support us by providing meeting space, facilitators, notice boards, thank you parties, newsletters, maybe there’s a small budget, and perhaps, occasionally, a seat at high-ranking decision-making tables.
While this all sounds friendly and supportive, we need to be clear-eyed: these efforts cost the institution virtually nothing, and the work we do, while personally appreciated, is institutionally inconsequential.
So what motivates us – the patients – to provide the work that we do? Let’s explore some of our own motivations, and how they affect our position in this rather complex power dynamic.
Why we participate
We are, of course, grateful. Many of us feel indebted to the institutions that saved or treated our children, and we want to help where needed. When we have the sorts of terrible experiences our families encounter, a kind of intimacy forms, with the staff, but even with the institution itself – we’re never more exposed and raw and vulnerable than when our children are weak and suffering. When we come through the other side, many of us are ready to give back.
We are also flattered – often we’re invited to join these initiatives personally, and it feels good to be recognized as someone whose ideas are valued. Even more so if the institution is high profile.
We’re flattered not just by compliments, but by an elevated special status – participating behind the scenes potentially unlocks a level of access to information that the general patient population doesn’t enjoy. And more than that: once we’re on a first name basis and sitting side by side with our own child’s specialist, collaborating on things unrelated to our child’s care, we establish an informal personal relationship that likely has a positive affect on how we are seen and treated. We can ask questions outside of clinic; our specialists become invested in our personal lives; we build a rapport that grants us more personalized service, which feels like better treatment or care. So, we also benefit by situating ourselves closer to the institution.
And let’s admit it – for some us, the hospital is also a second home – or even a first home – for long stretches of time – we feel welcome, it’s familiar and even reassuring. When my son died and I no longer had the same reasons to go to Sick Kids or Bloorview again, I felt a certain loss. Not just for the change in routine, but for the loss of a community of people who were always pulling for us. So, some of us might participate because to some extent, these are our people.
Finally, we are also keen to make a difference. We might have experience, skills and expertise that we know would benefit how healthcare is delivered, or how patients experience their healthcare services. We know that healthcare won’t spend money on certain things, and they rely on the free donated labour we provide. Which becomes a self-fulfilling prophecy – things won’t happen unless we do them, so we feel compelled.
These motivations of ours are often borne out of deeply personal and perhaps traumatic experiences. While I won’t jump to using the word ‘exploitation’, I can safely say that we make an ideal group of people who can be relied upon to give generously and continuously.
What are the implications of this?
One of our biggest fears as a community of patient advisors is ‘tokenism’. That people or institutions will just pay lip service to the idea of patient engagement. That they will just check a box and move on.
I would also say that healthcare leaders are terrified they will be perceived this way as well – they don’t want to be seen as merely pretending. When it comes to the people involved, there seems to be genuine interest in getting things right.
But I worry that, even with best intentions of the most earnest and ethical people, we have all co-created a system that continues to play out the same old power imbalances, just dressed up as something benevolent and consultative. I worry that what we have is indeed ‘tokenism’, it’s just more subtle and sophisticated.
We have been working at this project of ‘patient engagement’ for a decade or more. If healthcare really cared, we would be much further along by now. Why are we still talking about what ‘meaningful’ looks like? Why are patient experts still not paid for their expertise? Why have we not developed a body of research to quantify the value of patient engagement?
The idea of ‘patient engagement’ originated in a movement where patients wanted to claim ownership of their own health data and disease-specific research, demanding transparency, respect and the sharing of knowledge. It was originally adversarial, as is often required for disruptive social movements. It was a movement inspired by feminism and patient rights. And now? It seems to have been turned on its head – ‘patient engagement’ has become a healthcare initiative, as if they invented it. While not exactly malevolent, and perhaps not even intentional, this revisionist perspective strikes me as a defensive, co-opting manoeuvre – one that effectively seeks to manage potential patient discontent and minimize conflict.
Patients, in turn, have been enrolled as helpers, enablers and even insiders. Our own motivations to ‘be engaged’ make us especially willing and compliant. A select few of us – the ones who are easiest to work with – have been brought in close to the inner circle. And this so-called collaboration is conspicuously communicated to the immense benefit of the institution. Not only does this earn the institution praise for embracing patients, it neutralizes potential opposition or dissent, and lends legitimacy to the institution’s actions.
There is no doubt we do good work. There is no doubt that people inside healthcare as well as other patients appreciate that work. But no matter how much we are positioned as partners, we must acknowledge that the dominant and powerful party here is not us. That our mere presence achieves something for the institution that has nothing to do with what we accomplish. If we don’t recognize this and try to counteract it, we will forever be wondering why some patient engagement activities continue to feel hollow and unsatisfying and as though they didn’t matter.
My aim today is to unsettle us, and hopefully create some discomfort. To dispel any notions that we should feel flattered, or that our contributions are as effective as institutions would have us believe. The institutions to which we donate our labour and expertise should not be allowed to rest easy thinking their work is done, just because they have done the bare minimum to bring patients in.
I am not suggesting we abandon this project of patient engagement. I think we need to embrace it more fully. We can use our access privileges to hold them more to account, to make them earn the trust and legitimacy they so desperately want and need.
How can we make this concrete?
1. Don’t allow flattery to prevent you from asking important questions or facing uncomfortable truths
First: don’t allow flattery to get in the way of asking important question or facing uncomfortable truths. Ask why you were selected. Think about any councils you’re a part of: Does the group appropriately represent the patient population? Is it the same group of people on all the committees? Is it always the person with the most business experience who chairs the discussions?
Require that any committee you’re a part of has a stated plan for patient representation. Or, if there’s no interest developing a representative advisory, find out what exactly the group is for.
Don’t accept that efforts to diversify are too hard. And don’t accept that you can’t be paid fairly for your time and contributions. No matter how payment discrepancies are rationalized, know that the professionals from the institution are being paid for their time and are not volunteering. Whatever their contributions are, it is part of their job, and helps to support or build their career. This does not neutralize or negate any genuine enthusiasm or interest anyone has – but the truth is, they would not likely continue to give their time if they left field.
I don’t want to overfocus on money – it’s a symptom, not the main problem. My message here is simply that we need to be honest and acknowledge that in a group of equal contributors, if that’s indeed what we are, only some of us are being compensated.
I fully appreciate that many of us approach this work as charitable – the idea of payment for what we think of as volunteering is awkward, especially when we self-identify as the kind of people who volunteer.
But this is deeply intertwined with the lack of representation problem. It is our collective discomfort with being paid and our discomfort with talking about money that permits the lack of real representation to continue.
2. Insert yourself where patient representation is actually needed
Second: I mentioned before that patient advisories mostly exist at the level of patient experience and fundraising. These are worthy endeavours, but we should be equally represented throughout the organization, to the highest level. A single patient on a committee is not enough, unless they were elected by patients, or are the conduit through which the fullness of the patient population is heard.
3. Insist on accountability
Third: insist on accountability. For every initiative, ask about mandate, sustainability, governance, succession planning, funding. If the work is important, the institution should be able to answer: what problem is this solving, who wants this done, who benefits, what are the goals, how do we measure success?
Demand this of healthcare leadership as well as your fellow patient advisors. Let’s not be complicit in engagement that is meaningless.
4. Be prepared to say no
If the institution does not put in the effort to justify and substantiate what is being asked of you, is not willing to support efforts with more than just thanks and praises, or gets more PR mileage out of it than actual, measurable results, then decline to be involved. Say no.
As ‘patient engagement’ participants, hand-selected by the institution, assigned to activities they’ve pre-approved, we function as enablers, supporters, and cheerleaders.
If we really want to be patient advocates who represent all the patients, we should be defenders and agitators.
We should be the institution’s conscience, guiding and prodding and ensuring their actions are accountable. Our engagement should not just be meaningful, but challenging and substantial. And I think it’s up to us to define what that looks like.