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Patients Are A Distraction, A Sideshow

© 2013 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 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/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.

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

  • Barbara Davis

    Love the post Scott! You hit the nail on the head with the “woe as me” statement. You would expect the HCPs to express a little more sentiment when discussing a sensitive issue in front of their peers.

    • http://strangelydiabetic.com Scott Strange

      Thanks Barbara! I think this is changing, albeit very, very slowly. And it really doesn’t matter how fast something is changing when you are faced with it

  • sweetenedkate

    This just confirms my fear that doctors view their patients more as a “thing” and less as a person. I am not data.

    • http://strangelydiabetic.com Scott Strange

      Exactly Kate!

      • http://www.onlineusadoctors.com/ Terrie Dawson

        hmmmmmmm true kate

  • Lisa Fields

    Scott,
    This is a good reality check after coming back from #MEDX and remembering #cinderblocks. Their response chills me to the bone and reminds me how much work there is to be done. My hope comes from our Tweet Chats where the most successful ones, in any single way you could measure success, comes from those that have a patients and clinicians working as colleagues.
    Thank you for your work.
    Lisa

    • http://strangelydiabetic.com Scott Strange

      Thanks Lisa, and you’re exactly on point with your comment “as colleagues.” I can’t even being to describe how much I’ve learned from events like #cinderblocks and tweet chats like #hcldr!

  • Lee Ann Thill

    I wish there more of a collaborative effort to integrate the patient experience so it better informs clinical practice. There are certainly clinicians who favor this approach, but they are the exception. Collaborative opportunities are the exception though, and to be fair, are a relatively new phenomenon, so most clinicians don’t know any better, and the reality is that once introduced to the idea, many will be skeptical, or downright oppositional because it disrupts the status quo.

    Also, to be fair, there are “difficult” patients who present as examples of why doctors might be reluctant to consider a new paradigm. What clinicians might not recognize is that “difficult” patients are trying to get by in a medical system that is incredibly disempowering, while living with medical conditions that are endlessly frustrating. Instead of assuming the patient is the problem, they need to look at how “difficult” patients are merely symptoms of a broader systemic problem – and engaging patients is part of the solution.
    That doctor is exactly why we have to keep working, moving forward, and creating more opportunities for collaboration.

    • http://strangelydiabetic.com Scott Strange

      Brilliant comment, Lee Ann. Spot on with regards to “what makes a patient difficult?”

  • Sara

    Lee Ann makes an excellent point about the difficult patient. Although not on the topic of depression, I’ve been involved in some great advocacy opportunities with fellow patients and others that devolved into chaos because people could not advocate beyond their own personal, specific situation to help the larger population. I’m not sure how we find the balance.

    • http://strangelydiabetic.com Scott Strange

      Hmmm… this may be where the “marketplace” can help. If it is noted that certain people help while others hinder, those who help are more likely to get the “work” since they contribute to the overall value.

  • KANieder

    As a family practice physician who regularly blogs (when my website is working) and attended the #MEDX conference I can assure you that patients’ stories are most compelling and necessary. Physicians ARE coming around, accepting and even welcoming putting the stories and the data together. It is not as long a road as you think!

  • Bob P.

    I guess I see the lack of patient involvement in this particular conference to be disturbing. I can conceive of conferences at which a patient perspective might not be especially helpful. But it’s my (perhaps incorrect) understanding that the understanding of the relationship between chronic disease and depression is in it’s infancy. I would think, in this context, that patient stories ARE data.

  • Bob P.

    And I can usually write in English. :)

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