Using “citizen scientists” and crowdsourcing to spur medical progress

Preparing for this TEDMED talk gave me a wonderful occasion to pause and reflect.  With the release of the talk I have the space to give more color to experiences and ideas I shared there.
When my husband Pat and I were faced with the pseudoxanthoma elasticum (PXE) diagnosis of our children, we were shocked. The linear, idyllic, progression of life that we expected was derailed. Instead, a surreal unfolding ensued. Day by day we realized that we couldn’t go backwards to BEFORE. We also realized that we would have to go ahead into a space we never knew existed. This foray into biomedical research was beyond groping in the dark for a light switch to illuminate our world; it was like having to find the source of electricity to power us through.
Pat and I had no reference points, no landmarks, no understanding of genes, multi-systemic disease, or the fact that many conditions simply do not have treatments.  We were attempting to plot solutions using tools we had never seen nor heard of before. As Pat said, “We didn’t know a gene from a hubcap”.
Because we were neophytes, we had beginner’s mind and heart. For us, there was immense space around each of the problems we encountered and many opportunities for considering novel solutions.
It was that spaciousness that led us to build a registry and BioBank as our first endeavor. We could see something incredibly obvious, but seemingly unimportant to the research community. We could see that the inten...

Source: Disruptive Women in Health Care - June 15, 2017 Category: Consumer Health News Authors: dw at disruptivewomen.net Tags: Uncategorized Source Type: blogs