Abstract

Keywords: Unconference, Twitter, open innovation, patient engagement, participatory research.
Citation: Strange S. Health Camp KC: the unconference. J Participat Med. 2012 Oct 31; 4:e27.
Published: October 31, 2012.
Competing Interests: The author has declared that no competing interests exist.
 

There was a lot going on during the last weekend of September. I attended the Partnership With Patients conference on Saturday and the HealthCa.mp KC unconference on Sunday. By the way, I am a terrible live-tweeter, which is why you won’t see much from me except retweets. It seems that the part of my brain that allows typing is the same one that allows listening. So … I can either type or listen. Luckily, there were many others under the #hckc & #cinderblocks hashtag taking up the slack for my weak twitter kung-fu.

What is an “un”conference? That is a reasonable question; let me sum up.

When I saw there was going to be an unconference right here in Kansas City, I started to look into the definition. And then I stopped. Why would I want to do something so reckless? Because I decided that I wanted to learn about this unconference from ground zero, as a total noob [newcomer]. (I do well among that demographic.) I’m glad I did.

The proceedings opened with a kick-off meeting in which Mark Scrimshire from the Health Camp Foundation explained to us the history of the “unconference” and how this amazingly simple, yet mostly unknown, conference technique works. Basically, you decide to have a conference. Find a place where you can have one at extremely low cost, if not free. And then let people know it’s happening.

But instead of planning committees setting up programs and speakers, you leave the schedule open. When people ask you what the conference is about, say, “I don’t know yet.”

That is the beauty of that unheard-of idea: “I don’t know yet.”

What happens then? When people get there and it’s time to start, people write their topic ideas down on a piece of paper and tape it to an empty schedule grid. Once all the ideas are up, similar ones can be combined or rearranged to be in a different time and/or spot until it works.

The overarching topic this weekend was “Patient Involvement, Engagement, and Empowerment,” so that’s what people were focused on. It took about 7 minutes for 50 or so people to lay out a conference schedule with more than a dozen different topics covered during three 45-minute time slots.

Mark also asked each of us to share three words about why we were there. My three were technically four (“Diabetes Depression It’s OK”), but Figure 1 below shows a cloud of the terms from Shrink Rap:

Figure 1.

The first session I attended was about Twitter, moderated by @stales, @AfternoonNapper, and @DrBeckerSchutte. About 15 people attended this one. We talked about twitter basics: How hashtags work, how they are used to “brand” a tweetchat. what a tweetchat is, tools (ie tweetchat.com, tweetdeck, hootsuite, etc), what follow and following mean, DMs, lists and how twitter works worldwide where someone is online all the time.

Attendees shared stories of how Twitter helped people. @stales (who moderates the #BCSM, a breast cancer chat) shared a story about a woman having intolerable dry mouth as a reaction to chemo. The question was posed, was there anything that would help? Within about 24 hours, that question was tweeted and retweeted. In response, several home remedies were suggested and put down on paper. She asked her oncologist about them, he looked over the list and said, “It’s not going to hurt anything to try these,” and sure enough, one of the remedies worked!

I shared my story about how twitter made it possible for me to be at that event — even at that session. How I started as a diabetic, alone. Then I found so much support through the amazing people in the DOC that I’ve come to respect, along with finding people in other health communities that I have also come to respect. Listening to their stories made me realize that patients, whatever their condition, have so much more in common than we have differences because we are all patients. Patients willing to share our stories can make things better together.

We can’t truly understand what another person is going through, but we can listen to each other with the understanding that the worst condition in the world is the one that is affecting you or a loved one. We can learn from their stories. We can learn from the fact that everyone there wanted to simply make things better for everyone who may someday be a part of this community.
I think @PracticalWisdom may have summed the whole weekend up best during the last night’s #BCSM chat:

#cinderblocks Not once did I hear any Anger/Bitter feelings During the Weekend. Really amazing #BCSM

— Lisa Fields (@PracticalWisdom) September 25, 2012

The next session I attended, along with @AfternoonNapper, @ReginaHolliday, @TiffanyAndLupus and @GilmerHealthLaw, was moderated by @Lilly_COI, representing Lilly’s Clinical Open Innovations Group. Here’s information from the Lilly About page:

Eli Lilly Clinical Open Innovation is founded on the belief that drug development processes must improve, and that open innovation methods can be used to make clinical development better. We’re a small group of Lilly employees coming from diverse educational and professional backgrounds in disciplines like pharmacy, philosophy, IT, English, sales and management. We’re interested in working with you to make a difference.

I sat with the Lilly people at dinner the night before and was quite impressed with what they are trying to accomplish. They want to improve clinical development and trials by including open trial information from other sources, including patient experiences and insights. They want to be able to crowd-source the design of trials so that they will be more comfortable for participants, easier to understand, and provide results that would interest patients, not just other researchers.

Personally, I think this is brilliant and it is outstanding to see a major pharmaceutical company starting an initiative in the area of cooperative development. I see the current pharma industry environment to pre-Renaissance Europe, where everyone was so isolated that collaboration was simply impossible. The idea of drug development collaboration might be rather like a number of highly skilled but previously unconnected artists, scholars, and philosophers deciding to move to Florence, all at once. I mean, seriously, what could happen? Just a little thing called “the Renaissance.” The results for drug development probably can’t even be imagined just yet.

@AfternoonNapper shared how it was frustrating to be in a trial, having a medication really help and then not being able to get it until it is finally FDA approved. Participants feel incredibly shut out and kept in the dark during that time. They would really appreciate, at a minimum, getting an email to say “Thank you,” something just to acknowledge that they had put themselves potentially in harm’s way to see if a drug is safe and effective for everyone else.

@ReginaHolliday shared taking her autistic son to a trial enrollment. The two of them were left in a small, uncomfortable room with flickering florescent lights until several people came in and basically plopped a huge stack of paper down on the table in front of her son, and then just basically stood there looking at him. By this time, he was so uncomfortable and scared that he hid under the table. They were being treated only as Trial Participant X, not as Regina and her son. We’re people, researchers, please remember that first.

I really liked @Lilly_COI and their team because they listened to all of us. He practiced actual active listening and facilitated actual participation in the discussion. He asked us questions and answered ours if he could. This type of behavior is essential for better communication between all patients and caregivers. Patients must be at the table in a true discussion, an honest sharing of ideas and debates to come up with the best solutions. Everyone has experiences and wisdom that can be brought to bear on the topic, be it development, empowerment, or roadblocks.

There are thousands of years of practical patient experiences and knowledge that we can all draw from, but we have to know the best way to share our stories. How do we find and then apply that knowledge and wisdom to whatever problem is on the table.

There were so many interactions for the weekend that I can’t possibly mention all of my e-patient heroes that I met.

The hashtags for the weekend were #hckc for the unconference and #cinderblocks for the Partnership With Patients. Check them out!

Copyright: © 2012 Scott Strange. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.