I’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.
So very sad. I had a chance to hear Jessie speak at a QualityNet conference. I was struck by all the (spot-on) things you say about her here, but also the incredible grace that emanated from her. As I read her work, I found this grace in the reflections of her human journey, her insights for the health care industry, her wisdom about the full experience of being a patient, and her choice to stay focused on the good she could do for others with what precious time she had. The world today is indeed diminished by her loss. Could she have comprehended how many lives she touched?
Perfect, Pat – her incredible grace. Thanks.
Sad is the perfect word; sadness is the feeling. My hope and prayer is that she did indeed know that she touched many lives and hearts.
The world has indeed suffered a great loss today. Jessie will be sorely missed. My heart goes out to her loved ones and family.
Jessie was an incredibly strong woman and an inspiration to everyone she met. Now she will at last be at peace from the “aftershocks.”
Jessie was one of the bravest, wisest women I have ever met. It’s up to all of us to make sure her ideas and commitment to better, more respectful patient care carry on. In her own life-long struggle with disease after disease she consistently showed how smart she was, often surpassing the knowledge of her caretakers. She got them to talk to each other (sometimes). She got mad at them when she needed to and was grateful to them when they performed. And when she was feeling well enough herself – which was remarkably often given all she struggled with – she always did, without a trace of self pity. What an awesome woman.
Even in her sudden passing Jessie is giving all of us in the patient engagement movement a powerful opportunity to talk about the rarely discussed impact of what happens to friends and family when someone passes over.
She was one of many people in DC who reached out to me professionally last year but one of only a few who also took the time to just be my friend when I felt so very alone there.
Not only was she a mentor and a true leader n the patient centered / patient engagement community but a friend.
What you say about Jessie doesnt surprise me, Sherry. She sounded like just the kind of lady who would love to mentor others when time and opportunity met. I hoped to have more than an “RT” intersection myself some day. Dave’s lovely obit above got me surfing, where I found this neat CFAH vid which conveys a great sense of her wise enegy: What is Patient Engagement? http://www.youtube.com/watch?v=AO-YwwISruI
Thank you for preparing this well-linked site. Today we are a community of mourners. What a loss.
Thank you for writing this so we can share Jessie’s wisdom with more people. Her ideas and passion will continue to spread.
I am deeply saddened to hear of the loss of this great woman. Her work has educated many and saved countless lives. Jessie was a 21st century hero! We will all miss her. Sending thoughts and prayers to Jessie’s family and friends.
Thank you for the complete and sensitive way you shared this very sad news. She was such a bright person, in every sense. The world felt bright when she was around. So now, it feels a bit less bright. Alas.
Thank you so much for writing this. It helps us celebrate her and her work, even as we grieve.
On Facebook, Jody Schoger @JodyMS nailed it: “The advocate’s advocate.”
Beautifully said and right on target, Dave and Josh. She has been an inspiration and friend for many of us.
May Her soul rest in peace. She was such an inspiration and one of the strongest patient care advocates. Prayers goes to her family and friends.
I am so sorry to hear this news. Jessie was an amazing woman and an inspiration. She left the world a better place.
We will all have to work a little bit harder on behalf of patients to make up for the loss of Jessie. She most assuredly will rest in peace.
Thank you for this post – what a devastating loss for the world, despite the fact that she leaves us all in better shape because of her advocacy. I hope her family knows how much she is respected and appreciated and followed and admired and loved.
I heard the news in a middle of a Twitter healthcare chat and I had to withdraw from the chat I was so shocked and saddened to hear the terrible news of Jessie’s passing. She was one of my first heroes in the early days of stepping onto epatient ground and I have quoted her often in my presentations since. She will be deeply missed as a compelling voice for the patient. I know that we who mourn her passing will want to continue her work in her memory.
Few people have had such a positive effect on others as Jessie did. From the time of her first cancer diagnosis when she was in her early 20s, her raison d’etre was clear to her, and we all benefited from her decades of seeing her mission through.
Jessie’s legacy of education through collaboration will improve healthcare outcomes for generations.
Thank you for writing so beautifully about beautiful Jessie. I’ll prepare a post for our website.
Ah, no! I’m so saddened by this news and this loss, which I just found out about. I never met Jessie in person but I have long admired her blog posts and insightful tweets. Her words really stood out for their authenticity, their insight, their sensible-ness (is that a word?), and their compassion.
Losing a giant makes all who she touched feel more compelled to spread her wisdom, her sparkle, her passion — to help people help themselves in and through healthcare. As she reminded us, ‘people don’t just automatically learn how to be patients.’
We must learn how to be better advocates, because of Jessie.
I discovered that Jessie’s page was several years old. I’m not an experienced editor but I added her death info and somewhat updated her text.
If you know someone who’s qualified to make the page what it properly should be, please invite them. I’ll also notify someone at CFAH.
A particular concern to me is that before my edits, the text about her work was from the time when she seemed to be pretty skeptical about patients’ mental blocks against being activated (non-compliant, in her own case as a 20 year old). My personal impression is that in her later years she was less skeptical about that, as evidenced by the title of her last report, “Patient Engagement: Here to Stay.”
I edited accordingly. But I wasn’t intimately acquainted with her thinking so I may be wrong about that.
I got word from CFAH people that they’re working on Jessie’s page. Thanks!