My take on patient participation

onlinesurveyIn september 2013 I wrote a blog in Swedish fuelled by my frustration over the current situation regarding patient participation. I gave it the title “Enough is enough” (although in Swedish obviously). The blog seemed to resonate with a lot of people so I followed up with a blog with my suggestion as to a few questions for stimulating discussions. Here they are in English:

Question number 1: Why?

Why does the organisation/project/company want to engage patients? What do they want to accomplish by engaging patients? What kind of value do they see that the patients can add? What are their expectations on the patients’ participation?

Question number 2: How?

How are patients being engaged? Are the patients given what they need to contribute in a reasonable way to what they have been engaged to do? What does the process look like to ensure that the patients are given the influence and mandate they need to be able to do a good job? How is the patients’ participation facilitated by compensating them for the time and money they spend to be able to participate?

Question number 3: When?

When in the process are patients being included? Are they asked their opinion only when the result is to be approved and are expected to simply agree (because if they don’t, they are considered difficult to work with and will not be invited next time)? Or are they invited to constructively contribute to an honest evaluation? Are they maybe even given the opportunity to actively participate in the implementation of the project prior to evaluation? Is anyone bold enough to invite patients to participate already in the design phase? Unfortunately, I don’t think there are a lot of examples yet where patients have been given a genuine invitation to contribute as early as the planning phase and all the way through the steps to evaluation. If you know of any, please comment below.


Coming up with these questions was in no way the work if me alone, it was a collaboration with among others: @Durgastoolbox @Doctor4Quality @hannek12 @Gripenfighter @ElenaNoMad.

In the discussion following the Swedish blog post, a few additional questions were suggested:

Question number 4: Where? (by @KennethJohnson_)

Where in the organisation are patients engaged? On all levels? Why/why not?

Kontrollfråga 5: (by @Durgastoolbox)

Are YOU prepared to change when you engage patients? #patientengagement = #profengagement


I want to emphasise that in my view, there are no right or wrong answers to these questions. If the organisation/project/company don’t see any true value in engaging patients, they shouldn’t. But I think that these questions could serve as a way of initiating an honest discussion on patient participation.

Please comment and add your view!



1 comment

  1. Your questions are really well thought and to the point.
    Maybe the question “what have to your opinion been the obstacles earlier to real patient involvement and what are the obstacles today?” could be included.

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