by Mayank Agarwal | Jul 31, 2016
On July 13th 2013 at 7:15 pm I was sitting in a Wegman’s café eating dinner with two startup founders I was mentoring when I received a phone call from a dermatologist. He had removed a mole from my 10-year-old daughter’s arm a week earlier. My daughter and my...
by Society for Participatory Medicine Volunteers | Jul 29, 2016
The past two weeks I conducted an unscientific survey. I asked random strangers what they first thought of when they heard the word “Rare.” I got the following answers: Automobiles Gemstones Jewelry Books Mummies found in peat Animals Manuscripts Records Rugs...
by Society for Participatory Medicine Volunteers | Jul 28, 2016
Rare diseases often get the short end of the stick when it comes to accessible information and resources. That’s why we’re pleased to offer this index of rare disease resources for patients, caregivers, and health care professionals. National Organization...
by Mayank Agarwal | Jul 28, 2016
My name is Alexandra Albin (msaxolotl on Twitter) and I have an orthopedic condition called osteonecrosis or avascular necrosis (AVN). AVN is a painful and debilitating bone disease that typically affects long bones, is caused by a loss of blood supply to the bone,...
by Mayank Agarwal | Jul 28, 2016
On Halloween night 2014, my mother and I found ourselves sitting in an executive suite at the Verizon Center in Washington, DC, eagerly awaiting to see my favorite band, Fleetwood Mac. I know it may be a little odd that someone my age, which at the time was 21, is...
by Nancy Finn | Jul 21, 2016
Participants: Kyra Bobinet, Peter Elias, Nancy Finn, John Grohol, Sarah Krug, Mark Reifsteck, Danny Sands, Joe Ternullo, Jon Wald, Peggy Zuckerman. Minutes Approved Education, Peter Elias Have a team to developing participatory medicine curriculum The course module...
by John Hoben | Jul 14, 2016
Realizing personalized medicine’s full benefits will require active patient involvement. This is the first in a series of articles defining personalized medicine in the context of participatory medicine. The series will explore how current best practices can...
by Mayank Agarwal | Jul 14, 2016
Anyone who has been given a diagnosis and recommended treatment has to make a decision. But how is that decision made? What facts are provided? My experience and assessment of the professional state of the art: not enough. During the years I spent writing my book The...
by Mayank Agarwal | Jul 14, 2016
I first met SPM-er and palliative physician, Dr Michael Fratkin on twitter. Michael’s re-imagined end of life caring through video conferencing is amazing unto itself, but more importantly what resonated for me are his insights into dying not as a medical dilemma but...
by Mayank Agarwal | Jul 14, 2016
Participatory patients live with day-to-day ‘engagement’ but end-of-life is an oft-missed opportunity for participation that can result in more ‘control’ than any other time in life. End of life planning is also an opportunity for a deeper understanding of what makes...
