Wow, what a weekend! There was a lot going on this weekend, 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 was plenty of others taking up the slack for my weak twitter kung-fu under the #hckc & #cinderblocks hashtag.
What is an “un”conference you ask? Let me ‘splain. No, there is too much. Let me sum up
I had seen the term around before, but hadn’t really looked into it. Then I saw there was going to be one right here in KC, so I started to look into them. And then I stopped. Why, you ask, would I do something so reckless, impulsive? Because I decided that I wanted to learn about it from ground zero, as a total noob (I do well among that demographic). I’m glad I did.
First we had a kick off meeting where Mark Scrimshire from the Health Camp Foundation explained to us the history of the “unconference” and how an amazingly simple, yet completely unheard of, 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.
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 is that 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 a an empty schedule grid. Once all the ideas are up, similar ones can be combined, 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 10 different topics covered during three 45-minute time slots.
He also asked us to share 3 words about why we were there. Mine was really four “Diabetes Depression It’s Ok” but here is a cloud of the terms from Shrink Wrap
The first one I attended was about twitter, moderated by @stales, @AfternoonNapper, and
@DrBeckerSchutte. There must have been about 15 different people at this one. We talked about all sorts of things about twitter: 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 it is worldwide where someone is online all the time.
Attendees shared stories of how twitter helped people. @stales (who moderates the #BCSM, breast cancer, chat) shared a story about a woman that chemo was giving intolerable dry-mouth to, was there anything that would help? Within about 24 hours, all through that question being retweeted, several “home remedies” were 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, at that session. How I started as a diabetic, alone. Finding so much support through the amazing people in the DOC that I’ve come to respect. Finding people in other health communities that I have also come to respect, how 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 to make things better.
We can’t truly understand what each other goes through, but we can listen with an 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 whole weekend up best during last nights #BCSM chat
— Lisa Fields (@PracticalWisdom) September 25, 2012
People from the twitter-verse that you may know and that I was so happy to finally meet!
The next session I attended, along with @AfternoonNapper, @ReginaHolliday, @TiffanyAndLupus and @GilmerHealthLaw, was moderated by @Lilly_COI, representing Lilly’s Clinical Open Innovations Group. From their 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 them at dinner the night before and was quite impressed with what they are trying to accomplish. The want to improve clinical development and trials by including open trial info from other sources & patient experiences and insights. They want to be able to crowd-source the design of trial so that it is more comfortable for the participant, easier to understand, and has results that patients would be interested in, not just other researchers.
Personally, I think this is brilliant and it is outstanding to see a major pharma company starting an initiative in this area. Cooperative development. I liken the current pharma industry environment to pre-Renaissance Europe, where everyone was so isolated that collaboration was simply impossible. The idea of development collaboration is like a bunch of highly skilled artists, scholars, and philosophers deciding to move to Florence. All at once. I mean, seriously what could happen? A little thing called The Renaissance for one.
@AfternoonNapper shared how it was frustrating being in a trial, having a medication really help and then not being able to get it until it is finally FDA approved. Not to mention how in the dark that participants feels during that time. And how it would be nice to at least get a email saying “Thank you”, something to just acknowledge them for putting 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 and how they were in a small, uncomfortable room with flickering florescent lights when 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. Basically, they were not being treated as Regina and her son, but only as Trial Participant X. We’re people, researchers, please remember that first.
I really liked @Lilly_COI and their team, they listened. No eye rolling, actual active listening, actual participation in the discussion. Asking us questions and answering ours if he could. This is the type of thing that must happen for things to get better for 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 any topic, be it development, empowerment, 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 to find and then how to apply that knowledge, that 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!
** Disclosure: Cerner allowed us to use their education facility for this conference and we all appreciate that, it allowed this to happen. I paid for my own admission and travel and was not asked to blog or not blog about this event. All opinions expressed are humble, yet always correct and are mine alone
© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com