Patient Engagement:More Harm than Good?

Melinda Seed writes for Twice Diabetes

Sue Robins’ has worked in paid and unpaid patient advocacy positions for sixteen years. To  see her lay out in compelling prose how utterly defeated and  pointless all that work was, is heartbreaking. It should be compulsory reading for anyone undertaking or thinking of undertaking a patient advocacy role as well as for all professionals who believe they are engaging with patients.* The links provided in Sue’s blog to some critiques of patient engagement are also very much worth reading.

Although my experience has been less extensive and my contact more sporadic than Sue’s everything she said resonated with me. It’s that feeling that despite all the promises and all the time and effort you put into something, the outcome is not what it should be for those people on the receiving end of care. In my case, this fills me with anger at the waste of time and resources-why bother consulting when you’re just going to do what you want anyway?

Many people on Twitter empathised with Sue’s post and you could feel the mutual frustration at lack of action and hurt as a result of broken promises and feeling disrespected. It was this interaction that I thought summed things up well:

I am sure that there must be examples of patient engagement leading to change-somewhere internationally? Perhaps?  So far it’s crickets on Twitter in regards to positive outcomes.

I found myself agreeing with those like Katrina who put the point eloquently:

So patients caught up in the engagement system are left feeling hurt, burnt out and disillusioned whilst precious dollars are being wasted on meetings and committees with no output to show. Is it all just a way of deflecting “negative public pressure on the decision makers”?  Are the patients being engaged just sacrificial lambs for a system that doesn’t value patient input but wants to appear as though it does?

I would love to know what you think, whether you’ve had direct involvement in patient engagement initiatives or not.

*Patient engagement here refers to healthcare organisation’s attempts to include patient representatives in the design of systems and procedures used by the organisation in delivery of care. It doesn’t refer to interactions between clinicians and patients.

One thought on “Patient Engagement:More Harm than Good?

  1. Thanks so much for this, Melinda. Like you, I felt a profound sense of despair reading Sue’s powerful “swan song” blog post in which she said goodbye to her patient engagement work. But I’m guessing it isn’t just one major thing that can push us right off the deep end, but a series of small examples of ongoing disrespect that chisel away at our wish to do good.

    Many of us have had the surreal feeling of realizing that we’re sitting around this big table of (paid) professionals as a token presence, merely to satisfy the organizer’s need to check off a #PatientsIncluded tickbox…

    I’m so tired of organizations/government departments/hospital administrators/conference organizers being *surprised* when a patient speaks up to clarify a point or correct an error. For example, when I spoke up to say: “There’s a spelling mistake on your title slide!” to the Ministry of Health staff who had invited me to view their slide presentation on patient engagement (— better get a patient in here to see this before we launch it! —), it was clear that the group had not actually expected any input from me at all. They just sat there, stunned.

    As you say, “why bother consulting when you’re just going to do what you want anyway?”

    Thank you again…

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