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Are Patients a Distraction at Conferences?

** Next week, I will be attending the Medicine X conference as an ePatient Delegate Scholar. Medx is one of the most patient focused conferences on the planet with attendees from all portions of the healthcare spectrum and the world. I thought this might be a good time to re-post this from about a year ago

© 2013, 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

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 (not to mention we only learned of it about 4 days before the event). Lot’s 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 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 data valuable at all? The implications, the context is why the conference was being held in the first place. Data is only part of what constitutes knowledge, you need context to make it relevant to anything.

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/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 participative patients are. The marginalization of patients will continue.

In effect, patients will simply be a side-show.

** Also, check out the Global Access Program at Medicine X Conference 2014, this program will allow you to virtually attend the conference wherever you can get an internet connection at no cost (registration required)

© 2013, 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

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