Let’s give a hand to Volkman–a little thank you can go a long way

The BMJ (formerly called the British Medical Journal) is a weekly, peer-reviewed publication based in…

Yes, we have an extension! Yes, it is official! Yes, Yes, Yes. . . .(don't get me going)

Some of you know that I am honored to be a patient representative for the PCORI patient engagement panel. PCORI stands for Patient Centered Outcomes Research Institute, an agency created by Congress that funds $500 million dollars of research a year.) What is unique about PCORI is that it funds research that is “patient centered”—research that puts patients at the center of the process. Today, PCORI has released the standards for measuring whether research is truly patient centered. These include involving patients in determining the research questions and the characteristics of study participants, monitoring the conduct of the research, participating in study recruitment and data collection, and the dissemination of study results. The standard calls for reciprocal relationships where researchers and patients learn from each other. It also calls for patient/researcher partnerships and an environment of trust, transparency and honesty. Now, doesn’t that sound like something that Lyme patients need?

Why do we do what we do? Sometimes we win, but there are many, many (too many) bumps in the road on the way to success. How do we keep our perspective in the face of an adversary that seems unrelenting—vested, no entrenched, in a medical dogma that leaves patients on the side of the road? A medical society that believes that the views of patients are really–(really?) not relevant to the question at hand? I, for one, want to walk the road of other diseases that have been abandoned and forsaken by the medical establishment. But my road (and those of other illnesses), leads to success. And success–is all about the journey. Touching lives one by one until our day in the sun.