Partnering with Patients: From Theory to Practice

Patients have a unique expertise that is often overlooked. The day-to-day life experiences of a patient and the wisdom they gain as they navigate their healthcare journey are invaluable. In fact, that expertise is a key driver in helping to shape the future of healthcare. However, that expertise is often missing at key medical conferences alongside clinicians, advocates, policy makers, administrators, and other key healthcare sectors. During a time when managing the costs of care can place great burden on patients, the added expenses of having their voices heard alongside others can be difficult to manage.

A few buzz words in healthcare most of us have used or heard recently include:

Patient Engagement. Patient Voices. Patient Partnerships.

How do we move these terms from theory and one-off activities to practice? How do we ensure that the “key experts” –those navigating the healthcare system that we’ve spent billions on trying to fix—are alongside us at key meetings paving the path forward?

A painting from Regina Holliday's Walking Gallery

A painting from Regina Holliday’s Walking Gallery

In 2012, the Society for Participatory Medicine created a patient travel scholarship fund to help patients attend the inaugural Cinderblocks conference in Kansas City. Ten patients were awarded travel scholarships thanks to a crowd-funding campaign run by Regina Holliday and gracious donors that recognized the importance of patient participation. Our mission at the Society for Participatory Medicine is to continue that work, but we need your help!

Cinderblocks 2 will be held on June 4-6, 2015 in Grantsville, MD and organized by the most passionate advocate I know, Ms. Regina Holliday (aka Rosa Parks of Healthcare). Doctors 2.0 & You will be held in parallel on June 4-5, 2015 in Paris, France, and organized by the lovely Ms. Denise Silber, a healthcare social media influencer. Our goal is to ensure patients can participate at both conferences through patient travel scholarships. Awardees will share a blog post on their experiences at these conferences through the lens of a patient.

Lucien Engelen has also put a Patients Included spotlight on conferences that have embraced patients as partners. Let’s work together to make this a standard practice, as opposed to a deviation from the norm.

ACTION ITEMS:

  • If you are a patient and would like to be considered for a scholarship to either conference, please submit a blog post no later than March 31, 2015. Details here.
  • If you are a gracious donor and would like to contribute to SPM’s Patient Travel Scholarship, please click here.

Let’s put theory into action and find a way to truly partner with patients!

 

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