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Three continents. Five patients. Three conferences.

Dramatic change is occurring in healthcare where patients, “the true trans­formers in care”, are changing the playing field, and redefining how they want to engage and affect change.

The Walking Gallery in Grantsville, MD.

The Society for Participatory Medicine is a non-profit organization devoted to promoting the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

The Society for Participatory Medicine created a patient travel scholarship in 2012 to help support the attendance of patients at health conferences to help move the needle in advancing participatory medicine.

Last month, five patients were awarded the opportunity to attend the following conferences:

Cinderblocks2 image painted by Regina Holiday.

  • Cinderblocks 2, which was held on June 4-6, 2015 in Grantsville, MD and organized by Regina Holliday
  • Doctors 2.0 & You , which was held on June 4-5, 2015 in Paris, France and organized by Denise Silber
  • Health Datapalooza, which was held on May 31-June 3, 2015 in Washington, DC

Five patients, who face various chronic conditions, traveled from the US, Spain and South Africa to attend these conferences, alongside clinicians, policy makers, advocates, and other key  stakeholders. The patients’ unique perspectives were invaluable, as their powerful voices were recognized, heard and embraced by others in attendance.

“It was my honor to work with the Society for Participatory Medicine again to create patient travel scholarships, “ said Regina Holliday, a patient activist, whose persistent fundraising skills and dedication to this initiative have made it a success. “We need patients attending conferences just as much as we need patients hosting conferences.  It is really refreshing and inspiring to view the world of medicine through a patient’s view.”

What’s it like to attend these prominent conferences through the lens of a patient?

“My Medicine”, A Walking Gallery jacket created for Carly Medosch by Regina Holliday

Carly Medosch is a chronic illness patient and advocate, who by day is a program analyst in Washington, DC., and by night is a support group leader. Carly shares her experiences here.

Nuria Zúñiga is a lupus patient and advocate living in Spain, who is also a blogger, that uses her articles and public speaking to help shed light on her condition. Nuria shares her experiences here.

Vanessa Carter is a facial difference ePatient and digital activist in South Africa.  She has been developing an online collaborative community, which she hopes will improve the connected health  infrastructure. Vanessa shares her experiences here.

“Every patient attendee is a joy and a source of inspiration. And it’s reciprocal. Patients tell us how much  the respect they receive via our community, contributes to their health and well-being.  We can’t thank you enough at the Society for Parti­ci­pa­tory Medicine, ” says Denise Silber, organizer of Doctors 2.0.

The expertise of the patient is being sought after at conferences globally, yet this is still not mainstream, so I leave you with two action items:

  • If you are a patient that has attended a health conference, consider submitting a blog post, whether supported by an SPM travel scholarship or not! What was your experience attending through the lens of a patient? Your individual stories collectively become “OUR” powerful stories, and in aggregate can help move the needle. #healthcaretransformers
  • If you are interested in  contributing to the Patient Travel Scholarship, please click here.



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