“We have created an [engagement] industry that is self-serving, one that produces minimal or unsurprising output, by co-opting people into, and taming data to fit, institutional structures. We can shift the structures as much as we like, but it won’t change anything unless we find a new way of doing things…” So wrote David Gilbert (@DavidGilbert43), a UK blogger, in a recent piece entitled “The engagement Industry.” Gilbert’s blog, “Future Patient,” is about “musings from the edge about the possibilities of patient-led and user-led healthcare.”
As I read this piece, I was initially quite put off. Even though Gilbert writes from a UK context, he was writing about me and my work, and what her saying was none too complimentary. Then a strange thing happened as I continued to read: I found myself nodding silently in agreement.
What Mr. Gilbert was saying was pretty much the truth — at least as far as I have experienced in my work in Canada. I won’t quote extensively from the piece but I will comment on three key points he makes:
1. Data over dialogue. In health care, data is revered. It makes sense that a heavily science-based endeavor would be data driven, and most would agree that’s probably a good thing. However, I have found (as has Mr. Gilbert) that in health care we drown ourselves in data, sometimes to the point of decision-making paralysis. Or, we use data and evidence (or the lack thereof) as a bulwark to shield us from the human aspects of health care. Patients are more than test results and body parts, and health and healing are as much about people’s emotions and psycho-social aspects as they are about the evidence. It is also a fair generalization that in health care there is real fear of actually talking and communicating with patients. We think we do it. But we don’t really. In my organization, at the root of nearly every patient complaint is our inability to communicate clearly, simply and with empathy.
2. There is little, if any, engagement culture in health care. We have begun to build an engagement practice in health care (I’m not sure we’re quite ready to be considered an engagement industry in Canada quite yet). In typical health care fashion, we have thrown millions of research dollars at this, created whole organizations dedicated to patient engagement and patient-centered care, written journals, held conferences, built structures, devised clever frameworks, and all in all, generated a lot of heat but not much light. The purpose of all this activity is well-intended. We need these tools and approaches to give us some grounding and direction. At the end of the day, all this patient and public involvement is supposed to fundamentally change the way health care works by having the needs and interests of patients influence care and they system. But in spite of best intentions and all the frenzied activity under the banner of patient engagement, there has been very little shift in how people inside the system — carers and administrators — have responded. Engagement is still about events and initiatives; it is not at the core of who we are and how we behave. Until actions and behaviours shift to better reflect what patients are telling us and this becomes routine practice, patient and public engagement has not achieved its potential.
3. Engagement has yet to reach its potential as an agent of change. This point connects to my previous point about culture. To be fair, I have seen patient and public engagement lead to dark nights of the soul followed by some truly inspiring shifts in care and service. These are rare but they do happen, and therefore, a reason for hope. Unfortunately, mostly what happens is we use patient and public engagement to validate incremental changes that we probably would have done anyway, even if our patients hadn’t told us we should. Sometimes, after hearing some hard truths from those we serve, we do nothing because it’s hard, or there are barriers, or maybe because we’re afraid to admit that we don’t really know what to do next. Change is hard.
Don’t mistake this for discontent or disaffection, or chalk this up to cynicism. Certainly don’t misinterpret this as leveling blame at others who fail to think as I do — I am equally guilty if patient and public engagement has not delivered on its promise.
This is about holding up the mirror and the revelation that comes from naked introspection and reflection. It is one of the most annoyingly agonizing leadership practices, and one I have often found the most effective to get me unstuck when I really didn’t realize that was stuck.
The emperor has no clothes. As the fable teaches us, we often fail to see things that are plain to others, especially when so many circumstances are compelling us to believe what we want to. Does that mean patient and public engagement is a disaster and we should abandon it? By no means. Does it mean we need to do a better job at delivering on its promise to patients and the public? Absolutely.
In health care, we need the data and evidence, we need the hard science. We also need the humanity that comes from honouring the experience of patients, and this is what should drive patient engagement work.
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Amazing insight. As a frontline clinician working with the elderly and their families in the hospital setting – I see this regularly and struggle with it in my own practice and see it with my peers as well.
This is about a change in practice culture. And if time determines that reform cannot come from within the healthcare system, then maybe it will and must come from outside the system. Following this logic, should we expect and look forward to a healthcare revolution spurred by disenfranchised patients? Patients that are people like you and me, empowered by technology and the (eventual) liberalization of health information.
I’m waiting.
Cared for my dad the last 15 years of his life…. he was fortunate to not have had any major illnesses or diseases and died at 97, cause listed as “failure to thrive”. Got myself a real education with our health care system over those 15 years, from finding a family doctor for dad when he first moved in with my husband and me, to his living in a Retirement home, to his last move, to a long term care home. Encountered many problems along the way to which I provided feedback on what was needed…. better and more communication, coordinated services, more focus on the “human side of care and a willingness to listen openly to patients, their caregivers and to think through proposed solutions comprehensively so as to avoid more problems. Caregivers have been telling those with the ability to make the changes what’s needed… it is obvious and it is “not rocket science”.
Despite Ministry of Health putting committees, task forces together to study the problems, these just kept confirming/yielding the same problems caregivers and seniors have been complaining about for years and years, over and over again. The government requested results point squarely at what is needed (actions, behaviours etc..) to improve. Reports came out with what needed to be done and commitments were made, always prefaced by ” we take our seniors’ issues very seriously” and “we’ve made good progress, but have more to do.” No kidding. The Starkey report of some 10 years ago hit the problems on the head. Nothing meaningful was done.
Enough engagement already… we, know what needs to be done; there needs to be transparency, political will, action, a continuous monitoring/adjusting of services and new clothes.
Although written over 40 years ago, well worth reading is Sherry Arnstein’s “A Ladder of Citizen Participation” (Journal of American Institute of Planners, July 1969). She articulates a typology that drives to the central question: why are we engaging people?
The ladder scales from Degrees of Citizen Power (Citizen Control, Delegated Power, Partnership) to Degrees of Tokenism (Placation, Consultation, Informing) to Non-Participation (Therapy, Manipulation).
Generally, most forms of health care engagement tend to fall in the categories of Placation, Consultation & Informing. Equally evident over the last ten years or so – at least in Ontario – is the trend toward engagement as “communications”. Communications is not engagement; it is about shaping the message (as opposed to creating the message). Overall, the participation gap between patient/citizen and health system is wider than it was in the 1990s.
Also worth reading and reflecting on is Abelson et al “Deliberations about deliberative methods: issues in the design and evaluation of public participation process” (Social Science & Medicine, 2003). A good preliminary introduction, there has since been a wealth of material exploring deliberative dialogue as a meaningful tool for engaging people in priority setting and decision making. I am not aware of any health institution or system that is consistently and meaningfully using this technique for patient/citizen engagement. One reason might be the resource intensity of implementing such a process. The other is that most key decision makers have no desire to actually delegate any degree of decision power.
So we remain half-way up the ladder and veil the inability to climb by ever more elaborate processes and graphically pretty reports (this last comment is not directed at you Geoff or your organization)