Fall  2017

Whether the caring involves emotional support, taking on extra chores or caring for someone 24 hours a day, you will need to have a life of your own and to take care of your own physical and mental wellbeing too. This includes taking regular breaks and time out for yourself. 
Cathy Bandy

If I'm sitting down with a patient, I should be able to take advantage of everything we have learned up until yesterday to treat them.
Harlan Krumholz MD


Danny van LeeuwenHey there. Our new team’s first issue was successful with a few wrinkles to be ironed out. We do this labor of love to keep us all informed of our doings and foster connection. The little feedback we did receive was positive, so either it’s a hit or it’s so bad hardly anyone read it:) We welcome and solicit your feedback at newsletter@participatorymedicine.org.  Please put Newsletter Feedback in the subject line. Wanna join us? Let us know, the same place with Join Newsletter Team in the subject line. As we’re in the middle of conference season (who knew it was a season?), I’m heartened by the growing recognition and appreciation of SPM I find at the conferences I’ve attended (Patient-Centered Clinical Decision Support Learning Network, Society to Improve Diagnosis in Medicine, International Conference on Communication in Healthcare, Patient-Centered Outcomes Research Institute).

Keep the faith. Onward.

 SPM Conference

On October 25, 2017, the Society for Participatory Medicine held its inaugural meeting, Transforming the Culture of Care, at Boston Seaport World Trade Center. The atmosphere crackled with the passion for actionable improvement to the delivery, outcomes, experience, and perception of patient-centered care. Attendees beheld an insightfully curated agenda with case studies, small group chats, panel discussions, and experiences of trailblazing patients, care partners, and professionals. Keynote speakers delivered powerful, intriguing, and truly entertaining discussions.  These weren’t your typical buzzword-filled keynotes - no sugar-coating. The presentations and networking chatter gave voice to a paradigm shift from paternalistic medicine to informed decision-making, transparency in information access (Open Notes), and calls to action. The authenticity of each keynote speaker resonated deeply. As a witness, you felt the human connection and determination to drive the culture of participatory medicine forward.  more>

SPM in Real Life


Brief bios/plugs for new members (extracted from the Introduce Yourself Connect Community)

  • When Mary Mack’s heart health declined she quickly learned to become a strong advocate for herself. Mary believes a radical change in medical student education is necessary to change the culture of medicine. She is passionate about helping to make that change happen. Her other interests include playing the guitar and speaking Mandarin Chinese.
  • Jim Skinner created the Smart Patient Academy to document what the most resilient patients in the world do. He created a tool, the Playbook for High-Performance Patients and Caregivers. A cancer survivor and brain tumor patient, Jim comes from an insurance background of 24 years. His podcast, Stories with a Purpose, interviews resilient patients and caregivers.
  • Tahir Ahmad, a computer engineering student from Aligarh Muslim University, is currently working on EDocto, a health-monitoring device based on ECG technology, that can predict heart attacks based on machine-learning technology. It also provides suggestions for cardiovascular disease management, suggests nearby physicians, and helps in managing patient data. Tahir is looking for mentors!
  • Darcy Daniels, mom of a chronically ill child in Boston, is on the Family Advisory Council at Massachusetts General Hospital where she helps with the hiring process for key staff, speaks to the residents on their first day about family-centered care, sponsors an annual grand rounds, and runs workshops on communication for front desk staff. She also writes a blog on caring for children with chronic illness called Brave Fragile Warriors and contributes to STAT, The Mighty, and Bundoo.
  • Geoffrey Milos follows his interest in how the EHR can enable individuals to more fully participate in the management of their own health care. He believes that patient access to EHR data is a prerequisite in the emerging market for patient-empowering EHR applications. He would like to hear about active innovators in the personal health care application space, along with other organizations that actively promote individual access to EHR data.
  • Michael Robkin was the lead Enterprise Architect for Care Delivery at Kaiser Permanente. He has conducted research on patient safety and cybersecurity. He authored and collaborated on various clinical and technical scenarios describing how EMRs and medical devices could endanger patient safety. Recently, he had the painful experience of witnessing first-hand two members of his family fall victim to precisely the same preventable medical errors he had previously only studied.
  • Susan Lin, a patient with a rare autoimmune disorder with no known cure (diffuse systemic sclerosis or scleroderma), has become her own advocate. With a clinical background in Pediatric Occupational Therapy, she has served as a PCORI (Patient-Centered Outcomes Research) Reviewer, mentor, and ambassador, and now on the Advisory Board for the Assessment of Prevention, Diagnosis, and Treatment Options (Clinical Effectiveness), served as guest editor for one of SPM's newsletters, and is currently a member of American Congress of Rehabilitation Medicine's Conference Program Committee and member of the Rehabilitation Treatment Taxonomy Advisory Panel.
  • Cathy Bandy directed the first adolescent inpatient Substance Abuse and Addiction Treatment center in the State of New Jersey and coordinated Substance Abuse Services for her County Office on Aging. In 2000, she suffered a Traumatic Brain Injury (from a DUI driver), undergoing 5 years of cognitive rehabilitation. She learned that she needed a heart transplant and was told to “get her affairs in order.” Her current cardiologist and PCP found an experimental complex cardiac device. She now uses her experiences to help others facing their own battles with cardiac disease and/or disorders through writing, moderating, and empowering her fellow patients.
  • Betsy Furler, a speech pathologist, consults with companies to help make their tech products usable for older adults and people with disabilities. She is mom to Henry and Sam, both with a rare and undefined neurometabolic disorder. Henry has resulting severe intractable epilepsy and severe dysautonomia. Sam has mild dysautonomia and migraines due to the disorder. They have learned the importance of advocating for their older son's medical care since birth when he was given a life expectancy of 12 months. He is currently in college, living in a dorm, and in a fraternity.
  • Charlie Smith is a Family Physician and Director of the Primary Care Service Line at the University of Arkansas for Medical Sciences. He also served as Co-Editor in Chief, with Joe and Terry Graedon, of the Journal of Participatory Medicine.
  • Jose Vasquez inspires others to see the world beyond themselves.  For him, there is no better way to continue to be a hero to his wife and kids every day, than to work toward saving lives through medical technology and digital health. As a Green Beret and transitioning military veteran, he has traveled the world and worked through difficult challenges, and his goal is to have a positive and rewarding impact on humanity by identifying, utilizing and integrating cutting-edge technology in Healthcare, Hospitals, and Life Sciences in support of patients, caregivers, and providers.


Peggy Zuckerman and Helen Haskell hosted the fourth patient summit of the Society to Improve Diagnosis in Medicine (SIDM) conference. Sponsored by the Patient Engagement Committee of the Society to Improve Diagnosis in Medicine, it's theme was "Co-production in Diagnosis," with emphasis on communication tools and strategies and the potential of patient reporting to improve diagnosis.

Geri Lynn Baumblatt edited EMMI’s National Health Literacy and Technology Blog Series for Health Literacy Month.

Sarah Krug gave a TEDX Talk on the Patient Doctor Tango.

Gabe Howard won the 2017 WEGO Health Award for Best in Show Podcast. Roberta Carson won for Best Kept Secret. Several members were nominated.

Lisa Nelson presented at ONC’s Technical Interoperability Forum. See the video of her presentation, Care Plans and Consumer Sovereignty  here.

Grace Cordovano was the lead moderator for the patient perspectives panels at the EyeForPharma Patient Summit USA in Philadelphia on November 2-3, 2017. There were many refreshing perspectives and initiatives discussed by representatives from many pharma organizations with one common theme: we are working for patients. Key takeaways clearly resounded: invite patients early into the design, development, and delivery process, and ask them what they need and how rather than assuming you know.

Highlighted "Communities"

This feature highlights some of SPM Connect’s communities. See something of interest? Please join.

Research Library Project Community  7/25 Research Library Steering Committee held its first meeting. Chaired by Fernando Martin-Sanchez with Michael Robkin, Ruslan Savitskij, Larry Fagan, Michael Millenson, Danny Sands, Sarah Krug, Jan Oldenburg, Danny van Leeuwen, and Amy Price attending. Check out the Community’s library.

Economics and Health Care Community  For the discussion of issues related to the cost of care, payers, incentives, and other economic issues.

Medical Records Community. For the discussion of issues related to medical records, including access, privacy, EHRs, interoperability, patient contributions, and errors.

Board Retreat

Nineteen SPM members and Board members spent an entire Saturday in late October reviewing the impressive list of successes SPM has had in 2017 and the partial successes to build on. We began work on plans for the challenges we face. Reflecting on our many important successes during 2017 we talked about what we could learn from our wins and thought about how to apply this to tasks in 2018. It is impossible to capture all the insights and perspectives of an 8-hour retreat in this article, but some of the highlights can be found here. more>


News from the Board

Minutes can be found here.

Open Access References Fall ‘17

Please alert us to  open access references we can share with members.   Include a citation and/or a link that anyone can access.

Calling All SPM Members 

Do you have a journal or newsletter article or blog entry,  to be shared with fellow SPM members and beyond?
Our Society is only as strong as our members. Looking forward to excellent contributions from fellow SPM members. Thank you in advance!

For information about submissions to the Journal for Participatory Medicine go here.

Want to join the Newsletter Team?
Please send a note to 
and put Join Newsletter Team in the subject line. 

The e-Patients Blog is the longest running blog devoted to talking about the participatory medicine movement, since 2009. Contribute a Post / Contact Us

Submit a news article by sending to  newsletter@participatorymedicine.org 
and put Newsletter Article in the subject line. 

SPM Members Published
Fall ‘17

Please alert us to articles published by SPM members recently or not so recently. Include a citation and a link anyone can access. If the article is behind a paywall, please note that.

You can go to smile.amazon.com and choose the Society for Participatory Medicine as your preferred charity. Then every time you order at smile.amazon.com, the Society gets a donation.

e-Patients Blog
Follow our blog for regular weekly updates.

Check out the journal for new articles every month related to participatory medicine.

We'd love to hear from you! 
Send us your feedback, story ideas, and your own personal wins in participatory medicine!
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Please free to forward our newsletter to a friend!

The SPM Newsletter brings you periodic updates about and from our members, the Society, and its communities. 
The Newsletter Editorial Team includes:
Editor-in-Chief: Danny van Leeuwen
Associate Editors: Nicolle Bennett, Grace Cordovano, Peter Elias, Marilyn Mann, Michael Robkin
Production Editor: Nanette Mattox
Board Liaison: Susan Woods
Copyright © 2017 Society for Participatory Medicine, All rights reserved.

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