Tuesday, November 5, 2013

Patient power – the democratization of science

Kevin McCormack is blogging this week from the Partnering for Cures meeting in New York.

Moderator Josh Sommer and panelists Jessica Richmond and Geoffrey Ling discussed the role of patients can play in driving new cures
Patients have always been at the heart of the work we do at the stem cell agency. It’s only natural; they are the reason we are in business. So it was exciting to hear a call for  patient advocates to have a greater role and involvement in the way scientific research is done and in particular in the way clinical trials are carried out. That was the message from a panel entitled “Five People Changing the Face of Bioscience” at the Partnering for Cures conference.

Jessica Richman, the CEO of uBiome – the world’s largest crowdfunded citizen science startup – typified this call for what she called “the democratization of science” when she said:
“I love that the goal (of this conference) is faster cures. It really resonates with me. I want to change the process of science by using citizen science, engaging people and patients in the work themselves,”
Richman says patients are increasingly communicating with each other in a variety of forums across the internet because they want to be part of the solution. Patients and patient advocates are no longer content with being just the subject of research, they want to be more engaged in helping shape that research.

Laura Deming echoed that saying that “most researchers are driven by curiosity, not by patient needs.” Deming is something of a phenom. She decided at age 8 that she wanted to cure aging. At 14 she matriculated to MIT. Today she is a partner in The Longevity Fund, which supports research that seeks to expand the human lifespan.

Deming says researchers are trying to solve problems whereas patients want them to save lives. She says we need to bridge that divide.

Halle Tecco, the co-founded and CEO of Rock Health, which funds companies developing technological solutions to healthcare problems, says we are seeing a change in the old way of doing research, which was very much a top-down/hierarchical model.
“Healthcare is so credential driven and if you don’t have an MD or PhD your opinion is often ignored. But we want everyone to feel that they have something to contribute and a role to play, however small. We need to convince the healthcare people that there is value to be added to the overall goal by bringing in people from the outside, and listening to what they have to say.”
No one was suggesting that patients run the trials or dictate the direction of research, simply that their voices were part of the conversation, and that their ideas and experiences were taken into consideration when clinical trials were being put together.

Patients and patient advocates have the most at stake here, so it simply makes sense that we bring them into the conversation about the search for new therapies and cures.

We've embraced patient advocates from the beginning, including 10 dedicated advocates on our 29-member board. Those advocates play a critical role in helping guide the agency's direction and funding decisions with the needs of people actually living with diseases in mind.

Kevin McCormack

No comments:

Post a Comment