Tuesday evening I had the honor and pleasure of speaking to the local psoriasis support group. The topic was “How to be the CEO of your Healthcare Team”. It was a great evening. The group was welcoming and the mix of attendees was diverse. The group not only had those who have psoriasis but a Physician’s Assistant (PA), Sarah Kurts, who not only specializes in treating patients with psoriasis, but volunteers her time to co-facilitate the support group, and representatives from the pharmaceutical companies that serve the psoriasis community.
The magic came at the end of the evening when a few of us hung out to continue the discussion about healthcare, insurance companies, treatment protocols and ideas about the underlying factors that contribute to psoriasis. While we were standing there we got to throw out a bunch of ideas that would be great for scientists to study. That is the most important point, those of us who have an illness know the illness from not only the personal, emotional and spiritual aspects of having an illness, but the physical aspects of the disease. We know what sparks a flare. We know what causes trauma to the skin. We know, from lots of trial and error, how the environment impacts our health. This is incredibly valuable information that scientists need to know.
This type of impromptu think tank is what motivates people to become the CEO of their own healthcare. It’s the inner force that says to the world, “I have something to say and you need to hear it”. It’s incredibly empowering to have these insights and often is the driving force for those of us facing a chronic or life-threatening illness to voice our opinions to our health providers and those who represent us in the nonprofit arena. Every piece of information we can add to the mix increases the chances of coming up with a winning strategy to overcome illness.
Having these types of discussions is why support groups are so important. Support groups are the incubation arenas for new thoughts and ideas. They are the springboard for action. Groups or organizations that provide education and support are a gift that I feel not enough patients take advantage of as they deal with their illness. Knowledge is power and having people like the pharma reps at the meeting added another dimension to the discussion because they have the ear of the researchers. This is where the domino theory comes takes hold, you get a group of people together who begin a discussion and the first domino gets knocked down creating a chain reaction. I’ve talked to at least three people about some of the ideas we discussed in our mini think tank. I’ll take these ideas to my next meeting with my doctor and hopefully that knocks down another domino.
What will you do to create an environment that instigates new ideas and a call to action?
Pilgrim Pathway/Surviving Strong 