“It’s not just about the doctor — there is so much other stuff to do. And sometimes, you feel alone or overwhelmed and you need to just talk to people”
– Participant, Atlas of Caregiving Care Map Workshops, February 2016
It’s often said that the majority of the ‘care’ in ‘healthcare’ is provided at home, by family caregivers — not in a doctor’s office or medical institution. It’s this care, and these family caregivers, that we seek to better understand and support through the Atlas of Caregiving research and tech-enabled approach.
And, over the course of the Atlas of Caregiving Pilot, Roni Zeiger MD, Founder and CEO of Smart Patients, an online community for caregivers and patients, has provided us important insights on the intersection of caregivers, healthcare, and technology. As part of our behind-the-scenes introduction to some of our Atlas of Caregiving advisors, collaborators, and partners, I spoke with Dr. Zeiger about his work.
M Celine Takatsuno [MCT] What is your background?
Roni Zeiger [RZ] I’m a doctor, patient, parent, and firm believer that we can make healthcare much better by working more collaboratively with patients and families. I work part time as an urgent care doctor and full time in the “digital health” world. From 2006-2012 I had the privilege of working at Google where I served as Chief Health Strategist. For the last four years I’ve been building online communities for patients and families. I’m learning everyday how much patients and families can help each other with their health and wellbeing and am now committed to making peer support part of the healthcare system.
[MCT] What drew you to participate in the Atlas of Caregiving Pilot?
[RZ] While I didn’t learn much about caregivers during medical training, my years at Smart Patients have been a crash course for me about how patients and their families live with illness. Many members of our online communities are caregivers there on behalf of a loved one. Their stories, challenges, and loving support for their loved ones and each other have taught me what a central role they play in health care.
[MCT] What stood out for you during your involvement with the Pilot?
[RZ] The Atlas of Caregiving project has taught me even more about how complex, messy, and important caregiving is. We often think that healthcare providers are doing a good job if they hand a patient the right prescription. But care happens in the complicated context of home, family members, jobs, financial stress, and so many variables that stress our ability to take care of our health. Most of us need help outside the doctor’s office and that usually comes from caregivers. They are the unsung heroes of the healthcare system.
[MCT] How might this experience impact your work or Smart Patients in the future?
[RZ] This opportunity has made it more clear to me that Smart Patients can and should do more to support caregivers. About a quarter of our members are caregivers and the support they provide each other is amazing. We’re going to start being more thoughtful about ways we can support those members better with tools and resources and by participating in projects like the Atlas of Caregiving!
Learning about the importance of community to family caregivers, and how appropriate technology can support this core human connection, is a key step in helping make family caregiving easier and more effective. We appreciate Dr. Zeiger’s time and thoughts today, and throughout our pilot research!