Jessie Gruman's Legacy

Last May, I wrote a post, Jessie Gruman, A True Champion for Patient Engagement, highlighting the extraordinary contributions that Jessie has made as a tireless advocate for this cause.

This week, after a long illness, Jessie died, generating both great sadness and wonderful tributes from those who had the good fortune to know her, work with her or benefit from her myriad contributions to the fields of patient engagement, health policy, behavioral medicine and public health.

I, too, am deeply saddened by this news. All those who knew her will all miss her wisdom, perspective, advocacy, and passion. 

I, personally, have been forever changed as a result of my interactions with Jessie. Jessie had a unique capacity to connect with others on a personal and emotional level, while also offering her input, feedback and perspective in a way that was precise and powerful.

One might say that Jessie's "way of being" epitomized effective engagement! 

As I noted in my post in May, the Jessie is the founder of the Center for Advancing Health, an organization which has developed, collected and disseminated fabulous resources and tools on patient engagement, health behavior, health policy and other related topics. See also Jessie's Prepared Patient Blog, where an In Memoriam statement has been posted from M. Chris Gibbons, MD, MPH, Chair of CFAH's Board of Trustees. You will also find many wonderful tributes from colleagues and respected leaders from the many fields that have been touched by Jessie's work.

Jessie's has also left us several several books, written from the patient perspective, in which she shares her insights as a patient, researcher, advocate, consultant and policy expert. Her books include:

Aftershock: When the Doctor Gives you - or Someone You Love - a Devastating Diagnosis(2007),
Cancer Survivorship: What I Wish I'd Known Earlier (2013)
Slow Leaks: Missed Opportunities to Encourage Our Engagement in Health Care (2013)A Year of Living Sickishly: A Patient Reflects (2013)

I am fortunate to have known and been impacted by Jessie. Her clear, articulate voice and pearls of wisdom will be with me forever. As a result, I am more committed than ever to furthering her vision of patient and health engagement.

Strategy #6 for Empowerment - Connect with Others

See the 1 year anniversary issue of MPNforum for my latest The Empowered Patient column: http://mpnforum.com/the-empowered-patient-connect-with-others/

MPNforum is an online magazine that features news, interviews and stories on topics of interest to people with Myeloproliferative Neoplasms. My contribution to the May, 2012 issue focuses on the benefits of connecting with others through online magazines, support pages and listserves. Experiencing and expressing empathy are among the most valuable aspects of contributing to and participating in these online resources and sites.

Participatory Health Care: Maastricht University show what it can look like.

I followed a link from a comment to the most recent posting by Stephen Wilkens in his Mind the Gap blog ( Mind the Gap - Patient Enagement - Feb 2012 ) that demonstrated what articipatory health care can look like. It's also a model of an effective brief presentation on the value of a more patient-centered approach in health care.

Thanks to TED and Maastricht University, a world leader in patient-centered care and health professional education for producing this video. See also the TEDxMaastricht site ( TEDxMaastricht 2011 Inspiration Videos ) for several other excellent videos from their 2011 event on participatory health care. If you search around on their site, you will also find information on their planned April 2012 event.