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A Patient’s View of the Cures Regulations

By ADRIAN GROPPER, MD

How should we react to 1,718 pages of new regulation? Let’s start by stipulating the White House and HHS perspective

“Taken together, these reforms will deliver on the promise to put patients at their center of their own health care — you are empowered with control over your own health care choices.” 

Next, let’s stipulate the patient perspective via this video lovingly assembled by e-Patient Dave, Morgan Gleason, and the folks at the Society for Participatory Medicine. In less than 3 minutes, there are 15 patient stories, each with a slightly different take on success.

Continue reading…

Dr. Patti Brennan – #SPM2018 speaker preview “Supporting the Care Between the Care: The Role of the National Library of Medicine”

By ePATIENT DAVE deBRONKART

I’m a supporter of the Society for Participatory Medicine’s second annual conference on Oct. 17 in Boston. This article taken from the SPM “ePatients” blog tells you about just one of the great speakers who’ll be there. Please come join us  Register here.–Matthew Holt

Dr. Patti Brennan – #SPM2018 speaker preview “Supporting the Care Between the Care: The Role of the National Library of Medicine”

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.)

Since my earliest days in this work – even before our Society was formed – Dr. Patricia Flatley Brennan RN, PhD, FAAN, FACMI (or “Patti,” as she’s known to her many friends and fans) has been one of the most optimistic voices. She’s always been a dedicated, enlightened researcher, academic (at the University of Wisconsin, Madison) and voice of patient participation. On top of that, she was the director of the Robert Wood Johnson Foundation’s terrific Project HealthDesign: Rethinking the Power and Potential of Personal Health Records, which ran from 2006-2014, an absolutely pivotal period in the onset of personal health data. Patti knows that knowledge is power, and that patient power is naturally optimized when patient knowledge is optimized.

So you can imagine how thrilled I was when, in 2016, she was appointed the next Director of America’s National Library of Medicine (NLM). In addition to being extremely participatory, perhaps it’s no coincidence that she’s the first woman nurse and the first nurse in the post.

In a moment I’ll say more about the history of this position, and its significance in the timeline that led to SPM. For now, consider this about her topic at our conference, “the care between the care,” particularly the NLM’s role.Continue reading…

Come to the Society for Participatory Medicine conference (Boston, Oct 17)

Join me at the 2nd annual Society for Participatory Medicine (SPM) conference, co-located with the Connected Health Conference at the World Trade Center in Boston. It’s magical and very inexpensive–Matthew Holt

DEMOCRATIZING HEALTH CARE!
Me. You. Us. Healthocracy.

Don’t hesitate another minute! Avoid severe FOMO (fear of missing out) and regrets by registering for the second annual SPM conference!

Hear from amazing speakers Patti Brennan, Rasu Shrestha, Bill Marder, Sarah Krüg, Ivan Handler, Casey Quinlan, Jason Bobe, Brennen Hodge, as well as mother/daughter heroes, Angela & Grace Kennedy, and Kristina & Kate Sheridan. Help create a Participatory Medicine Manifesto in the afternoon. Patients Included!

Spotlight on Casey Quinlan, Mighty Casey Media

Casey’s work in standup comedy, network news and health policy will entertain, enlighten and inform. After a cancer diagnosis 5 years ago, Casey wrote Cancer for Christmas: Making the Most of a Daunting Gift and produces the Podcast Healthcare Is HILARIOUS. Her favorite people to work with are those who want to fix the system, not serve the status quo.

Learn more about all of the speakers here.

Learn more about the conference or register today (seating is limited).

CONFERENCE DETAILS:
Wednesday, October 17, 2018 (7:30 am – 5:00 pm)
Seaport World Trade Center, Boston, MA
$100 for SPM Members ($150 for non-members)