#HealtheVoices15 – Peeking Into Other Patient Communities

When you are living with a chronic illness, your view on your particular disease can be laser focused, and that’s perfectly fine. We want to raise awareness, to share our stories, and to connect with others just like us. That’s what builds strong, impactful communities.

healthevoicesconferenceI learned this weekend at the Health eVoices conference that we must peek into other patient communities. Health eVoices was the brainchild of Janssen Pharmaceuticals, who paid for my travel and lodging expenses to have me (and about 60ish other patient advocates) attend and participate. They paid my travel and lodging, but not my opinion and thoughts about what happened there. These thoughts and opinions are what I want to share…

Our Community Is Not Unique

There were patient advocates from many communities: HIV/AIDS, Rheumatoid Arthritis, Psoriasis, IBD, Crohn’s, Colitis, Cancer, MS, Mental Illness, and Castleman. (More on Castleman later.) These individuals may not be the loudest or most prominent voice in each community, but as I keep saying: every voice matters. They speak from their hearts, their passion pours from every pore, and they want to bring their experiences out of the darkness and into the light where they can be a beacon to others.

We all want that. Each community wants to be heard, to be understood, and to be recognized – not just by the general public, but by decision makers and people who can make their lives easier. Our Diabetes Online Community is filled with powerful voices, but we aren’t unique; so many other patient communities have powerful voices, too. I spent a lot of time at Health eVoices thinking about how we can connect and learn from other communities (and I’m sure that I wasn’t the only one).

Learning From Others is Crucial

Dr. Zubin Damania is a name you probably wouldn’t recognize, but you might have heard of ZDoggMD. He was our keynote speaker on Saturday morning and while I was a little skeptical sitting down (“What the hell? A doctor turned comedian – comedian turned doctor yukking it up about healthcare? Please.” Obviously, four cups of coffee that morning did not make me feel particularly perky.), by the end of his talk, I was ready to throw my glucose meter on stage in tribute. (Don’t worry, I didn’t. Would have probably smacked him in the head and I hadn’t downloaded the data yet.)

He talked about how he got to where he is today, and how he uses humor to raise awareness through some hysterical (yet medically correct!) videos – and then about his vision of Health 3.0 through programs like Turntable Health. (50% of the patient exam rooms are actually consultation rooms where patients and medical teams can have conversations face-to-face in comfy armchairs.)

I will also always sing Usher’s “Yeah” if I have to give CPR because of ZDoggMD. So will you after you watch this (and I suggest you do!).

We also listened to Susannah Fox, a health and technology trendspotter (her term) and trendsetter (my term). She was our afternoon keynote speaker, and also talked about how far we’ve come from the paternalistic doctor-patient relationship to today’s savvier patient – and yet, we have so much further to go. While I typed from my laptop, checking my Twitter feed from my smartphone, she shared statistics about the inequality that still exists for patients who can’t really access the resources that are needed to take control of their own healthcare or help others in their family.

There were smaller sessions focusing on creating a living as a patient advocate (Chronicbabe is the bomb, sharing everything from her bag of tricks and being very open about how she translated her patient life into a living.), compassion fatigue with Dr. Koffman and the DOC’s Kerri Sparling, the legalities of blogging with Jimmy Nguyen, and tracking analytics with Tim Cigelske.

But it was the people sitting in the seats next to me during the sessions and meals that gave me the most to think about. As much as we complain about people not understanding diabetes, I found myself being one of “those people,” asking what is probably simple questions that individuals of that disease answer over and over and over. Like many of us in the Diabetes Online Community, they were gracious and responded with articulate and heartfelt answers. There wasn’t enough time to learn about all of these diseases, but learning about them is crucial.

We All Try To Make It Look Easy

I say this all the time with diabetes: our goal is to live long and healthy lives with as few complications as possible. It’s not just with diabetes. It’s every chronic health condition and every illness that impacts us on a long-term basis.

HandI watched as people checked blood sugars (“Go, diabetes tribe!”) at lunch tables, grabbed ice packs and heat packs from the relaxation room that Janssen so thoughtfully provided for their swollen joints, checked on family members via text and phone calls in hallways, swallowed pills during sessions. We all try to make it look easy to not be the victim, but this group of advocates made it easier to be open about our particular issues. I was surrounded by amazing strength and resilience, even when it’s difficult to move and function “normally.”

So, What’s Next?

What can we do, as communities, to help others? For me, my takeaway was this: I want to learn more about other patient communities and reach outside of the diabetes community to strengthen us – and by us, I mean patients – all patients. We all know someone, right? (You’re not a hermit.) There is someone in your circle of friends who is at risk for breast cancer, a blood clot, or other health condition. You may have met someone with Crohn’s or MS, but you might not have met someone who has Castleman Disease – because they don’t even know they have it yet.

Let’s learn from each other. Support each other. Find ways to connect and share and raise each other’s voices to build stronger patients – and in doing so, strengthen everyone’s community.

I learned this weekend about Castleman Disease from Raj, a medical student in Nashville who was diagnosed with this rare disease. What if I told you that most people are misdiagnosed? Wouldn’t you want to know a little more about it? I do, because you never know who you’ll meet that might need your support.

Here is just one resource about Castleman Disease for you to quickly learn about it. I challenge you to read it and then file it away in your big brain. I will be sharing more information about different chronic diseases so that we can all become better educated, raise awareness, and get our voices heard. What can you do today to do the same?

Hint: Share this post. Share information about Castleman. Ask someone about their own chronic illness – and learn from them. We are one patient community, made up of many patient communities… all brave, all eager to share, and all looking for support.

 

0 comments
  1. Loved the video. Your event sounds like it is something a lot of us need.

  2. […] HealtheVoices 2015:  Peeking Into Other Patient Communities […]

  3. A number of years ago, I started “lurking” in some of the other patient communities, but I didn’t join what I saw as “artificial” communities sponsored by nonprofits, drug companies or the like and I discovered a #Rhemetoid Arthritis community which I saw looked much like the DOC did a decade ago. I made comments on a few posts; but my real goal was to try and collaborate on issues that affected all of our communities, things like FDA biosimilar guidance and the like. Although I wasn’t as successful as I would have liked, I believe it had as much to do with the communities level of development or maturity, and I don’t mean that negatively, but just the point where each community is and dealing with issues that impact them. Over time, however, I do see collaboration on issues beyond government policies, on issues like insurance coverage issues and appeals processes, etc. I believe patients have a great deal of common issues we all must deal with, and perhaps we can learn from one another. Anyway, this was an interesting post IMHO.

  4. […] Here’s my recap of the 2015 conference. Worth a gander. […]

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