“MPN

Last week, Esther and I spent a full day with other patients and care partners at an educational symposium at New York-Presbyterian Weill Cornell Medical Center. While the focus was on improving understanding of MPNs, rare myeloproliferative diseases like the one I have—myelofibrosis (scarring in the bone marrow)—the scene had lessons for us all. 

More than 100 patients and care partners attended to hear from some of the nation’s most respected specialists in those conditions. And the content included some heavy-duty science that the audience understood. Because of a number of factors affecting many serious conditions these days more and more patients and family members are able to “talk turkey” with the leaders in medical research and specialized care. My belief is that this growing vanguard of knowledgeable patients fuels an acceleration in the uptake of new science and better healthcare. 

What are those factors?

  •       The Internet: The availability of this at-your-fingertips channel allows even the most remote patient or family member to seek answers to their most pressing health questions.
  •       Reliable information channels: While it’s true one has to be a savvy information seeker, patients are learning how to be “smart shoppers” to identify reliable and ongoing sources of information for their health concern.
  •       The commitment medical leaders have to “smarter patients”: No longer do the top doctors want to dictate treatment plans to patients. Today the idea of “shared decision-making” and patient empowerment is taking hold and our experience is the top physicians believe in it.
  •       Consumerism has taken hold in healthcare: In years past, patients were confident their doctor always knew best. Now we aren’t so sure and that fuels us to look further, whether it is seeking second opinions or challenging the initial recommendations of our doctors.
  •       Realization by pharma of the power of the patient: While there are still many who believe their overriding effort should be to inform physicians, now more companies recognize their responsibility to share timely information with patients and the wisdom of informing patients to their business success.

The symposium in New York was a celebration of the partnership today between the most elite physicians who in earlier years were out of reach to most patients and how today there is an ever-stronger link. And more and more this is not just in an auditorium or one day a year. It is ongoing and increasingly virtual. For example, just see the several interviews we broadcast from New York as Facebook Live programs. Every expert was available to us and that has generally been our experience today.

I would be remiss if I didn’t call out one senior physician in particular. That’s Dr. Richard Silver, a noted MPN specialist at Weill-Cornell. Dr. Silver continues to see patients, attends medical meetings, organizes and leads conferences like this one in New York, and mentors younger physicians. And he is 89 years old and “sharp as a tack”! Please take a look at my video interview with him and be inspired by his dedication to patients and their families. 

“MPN

So the “patient power” wave continues. It is fueled by a thirst for better care, an understanding of new science and personalization for an individual or a loved one, and, of late, a desire for a more efficient and affordable healthcare system where all of us can get access to the care we need and deserve.

Thanks for joining me, sometimes in person, other times online as we patients and family members take on more power and have a stronger voice. I am grateful that many of the leading physicians are our partners in this effort, and last week’s event in New York was a celebration of that.

I welcome your comments and wish you and your family the best of health!

Andrew Schorr
Co-founder, Patient Power

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.