NEW MEMBERS: Fall ‘17

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.

MEMBER NEWS: Fall‘17

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.