Are patients marginalized at health conferences?

Recently, I was bemoaning the fact that while the first conference specifically addressing diabetes and depression was a good start, there really wasn’t a significant patient presence. Lots of experienced professionals in the field, but startling few people who had actually walked-the-walk with significant depression for years, decades even.

While this format will surely offer a lot of information from the professionals viewpoint, it seems that it would be a bit sterile, without true context unless attendees could actually hear the effects of depression on patients.

A couple of comments caught me a bit off guard, these come from a single health care provider (HCP) and I’m trying to explore how pervasive this opinion is.

One included a comment that said: “At events like these, patients are a distraction when HCPs want data first, implications second. It’s for the best, trust me.”

Data without implications, without context and effects? Without any of those things, why is that knowledge valuable at all? The implications, the context is why the conference was being held in the first place.

I replied that I felt that comment was very paternalistic and their reply said to remember that they had feelings too. Replying that I also had feelings, the next reply gave an explanation that ended with: “The patients I’ve seen present have been ended up just yelling at doctors.”

I agree that the stage should not be used to just yell, but I have to wonder if that was actually what happened or if the reason people are willing to get up there and present is being totally overlooked, ignored, disregarded or misunderstood.

Patients tell their stories and advocate so that whatever happened to them won’t happen to anyone else.

Stories are very powerful, which why they’ve been around since we climbed down from the trees. Stories put a face on an issue, make it real. It’s no longer some stat or incident report, it now has happened to a person.

Now, that’s pretty much all ePatient advocacy 101. What really disturbed me a couple of days later was the thought that HCPs attending these events may have a cultural bias against patients presenting, viewing them as simply a “bitchfest” in front of an audience.

Does that preconception exist in the medical community? Is that sentiment common among HCPs? Are these stories of things that patients, that people have gone through, endured, survived simply viewed as, “woe is me, look at what these bad people did to me?” How many professionals actually look at these stories as something to learn from?

If that doesn’t happen, if that culture shift does not take place then it will not matter how participatory patients are. The marginalization of patients will continue.

In effect, patients will simply be a sideshow.

Scott Strange blogs at Strangely Diabetic.

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