I think one of the hardest parts of having a chronic condition is the almost inherent loneliness which comes along with all of the symptoms. When I think about my MS and my family’s understanding of it, I am forced to concede I would not wish them to understand. I think it is difficult for outsiders to understand not just the effect of the symptoms at any given point in time but also the fear and unpredictability of timing for likely outcomes. So I can not just wish my family to experience MS for an hour or a day because the worst part is the unknown.
It is with this feeling of isolation of experience that I went to the conference for patientlikeme.com this past week in Boston. It may take awhile for the trip’s success or failure to be seen in term of expanding the utility of the site by generating common language to tease out health information across medical conditions. What is known now is how much I and others across the spectrum seemed to enjoy meeting each other and the staff of patientslikeme.com.
After our last meeting, I was trying to phrase why it meant so much to me to meet these strangers previously known only from a web site. The closest I came was the realization of the honesty with which we all talked. There were no walls needed to spare the imaginations of those with whom we spoke. Everyone there had faced their own medical trial and moments of uncertainty. Watching the group dynamics was fascinating as we tried to capture in words and questions the ideas of “health, well-being and sickness.”
Very basic questions remained unanswered, such as for what purpose are we asking the questions. Are we using the questions for diagnosis or tracking known problems. Answering this basic question will be key for determining the wording of questions and ultimately the utility of the instrument designed. I was surprised to hear such differences and commonality in unexpected places across the spectrum of our experiences when it came to defining such basic terms as “health.” I can hardly wait to see where the patient centered research project goes from this hopeful first step.
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On a side note going back to last week’s appeal of Blue Cross Blue Shield’s rejection of covering Adderall for me, my neurologist wrote them (after their decision in my favor as it turned out). In his letter to them he quoted three studies showing the positive impact of adderall for MS patients. What I found especially heartening was the three studies show the same results as looking at Patientlikeme reported data. It boosts credibility of a method when the same results are reached using an already approved methodology. The use of patient oriented research could allow for much faster segmentation of study populations to better recognize where a treatment is likely to succeed or fail. The better segmentation should drive down research costs over time and hopefully allow for a shorter time between discovery and market for new products.
If we can not have a cure, the next best thing is an improvement in how we search for cures. It is my hope that patient centered research will allow for quicker, cheaper and possibly better studies of new treatments. Maybe what we are seeing now is a first step in the right direction. I’m not betting on getting it right the first time. I’m betting on being able to learn ever more quickly from our missteps.
