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Jessie GrumanI’m saddened (really saddened, as I write this) to report that one of the titans of our movement, Jessie Gruman, died unexpectedly yesterday at home in New York. She had long been sick, but the demise was sudden.

In addition to the mountain of work she produced as founder of the Center for Advancing Health (CFAH), Jessie was one of the early forces in SPM: she was the founding co-editor-in-chief of our Journal of Participatory Medicine (JoPM). As many of you know, she was in her fourth cancer, all initiated by the megadoses of radiation she got as a teen for her lymphoma, before medicine knew it would later cause cancer after cancer in adulthood.

(Other well-known lymphoma e-patients in our community include Alicia Staley and Kym Martin, wife of “Gimme My DaM Data” songwriter Ross Martin).

SPM President Josh Seidman was one of the Ziff Patient Engagement Fellows sponsored by CFAH, so he was among the first to be notified.  In an email last night he wrote to some of us,

My heart just sank as I opened this email (despite knowing of Jessie’s frail state).

For those of you who had the opportunity to work with Jessie, she was truly an inspiration. Nobody — and I mean nobody — has had more “Aftershock” patient experiences than she. Jessie had a remarkable ability to weave her personal patient experiences with a rigorous qualitative research methodology to produce not only insightful commentary but incredibly practical guidance. Jessie was as ardent an advocate for patient engagement as ever existed and yet remained skeptical of “silver bullets” or singular solutions because she understood both the complexity of patient journeys and the great diversity of patient experiences. For me personally, she also was a great mentor, a patient teacher, and a professional counselor.

Long before any of us was advocating for patient engagement, Jessie was already an “experienced patient” (probably multiple times over in some of our cases) and fighting the good fight. Her leadership paved the way for so much good in the evolution of our health care system because she understood both the power of personal inspiration and the importance of practical solutions and guidance.

She will be greatly missed, but her work and spirit will live on for many years to come.

“Aftershock” is a reference to her terrific 2010 book Aftershock: What To Do When the Doctor Gives You – Or Someone You Love – A Devastating Diagnosis.

Much will be said about Jessie’s life and her work in the coming days. For now, here are some links.

  • Here is her last blog post, about CFAH’s new report, Here to Stay: What Health Care Leaders Say About Patient Engagement. (The full 170 page PDF was published free, two weeks ago. Fittingly, several of the “health care leaders” interviewed were patients – SPM members Kelly Young, Carolyn Thomas, Eve Harris and me – as well as SPM members Lygeia Ricciardi and co-chair Dr. Danny Sands.)
  • Here is the announcement of her passing on the CFAH site.
  • Here is JoPM editor-in-chief Charlie Smith’s 2010 thank-you editorial to Jessie upon her departure.
  • Here are her many posts and mentions on this blog.
    • One of my favorites is this one in 2011 – the full text of her speech at ICSI, including the PDF of her new Patient Engagement Framework
  • Here is the live feed of her mentions on Twitter.



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