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Here’s the latest in our series of posts by and about the outstanding speakers we’ve lined up for the Society for Participatory Medicine’s second annual conference on Oct. 17 in Boston, attached to the prestigious Connected Health conference. Register here. (Our #SPM2018 blog series has more about the speakers and activities.)

Where’s the future of medicine? If you ask conference speaker @JasonBobe, it’s with the patient.

“The aspect of participatory medicine I spend most of my time thinking about and working on is making organized health research something that is available and meaningful to everyone,” according to Bobe, associate professor at the Icahn School of Medicine at Mount Sinai, and co-founder of several organizations focusing on participatory research: Open Humans Foundation, PersonalGenomes.org, and DIYbio.org.

Bobe’s presentation, “The Future of Medicine Begins with You,” will take place in the afternoon of SPM’s 2d Annual Conference. He’ll explore how organized health research might become a regular part of our lives and embedded more deeply into the fabric of our culture – the same way “music, commerce, cat videos, and many other things are pervasive in daily experience.”

As he explains, “I’m afraid too many people believe that health research just sort of automatically happens in the background — and that progress in medicine is inevitable because there are a lot of institutions and professionals involved in its pursuit. They think, ‘What possibly could little old me have to offer?’”

As those who are part of the participatory medicine movement often discuss, people from across the healthcare continuum have plenty to offer, but they don’t have a sense of agency (the ability to act and make things happen). They don’t feel they as individuals can have a meaningful impact.

But Bobe has seen the impact: “Working in biomedical research and healthcare, I have been particularly humbled by being witness to the experiences of many people with rare diseases or understudied health conditions. Nowhere is it clearer than in these communities that the only way out is through it. Good solutions don’t magically fall from the sky. What is required is direct action: for people with common cause to band together, aggregate their resources, coordinate efforts, recruit scientists and researchers, and inspire others to join your quest. It could not be a more social or participatory endeavor.”


Join Us for #SPM2018 in Boston October 17

Learn more about SPM’s second annual conference on Oct. 17 in Boston or register here today ($100 for members/$150 for non-members). In our early years it’s priced as a great bargain for a full day. And see this blog’s #SPM2018 series for more about the speakers and activities.

 

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