There is a gap in the literature regarding the key areas that measure the success of navigation programs, but a new set of standardized, evidence-based navigation metrics, developed by the [ Read More ]
January 2017 VOL 8, NO 1
Smart Patients: The Power of Sharing Personal Health Experiences
An Interview with Roni Zeiger, MD, of Smart Patients
Smart Patients cofounder Roni Zeiger, MD, believes the next tipping point in medicine includes tapping into the knowledge created by networks of engaged patients. To this end, Dr Zeiger partnered with Gilles Frydman, a pioneer of online health communities and founder of the Association of Cancer Online Resources, to create Smart Patients. To simply describe it, Smart Patients is an online community for patients and families affected by a variety of illnesses. With 60 disease state communities and an efficient user interface, Smart Patients is a wonderful resource for patients and caregivers to connect with other patients and caregivers. The conversations within each community allow patients to learn and share information about scientific developments related to specific conditions, share questions and concerns with other members, and then use knowledge gained within the context of their own lives.
The creators of Smart Patients believe that patients are the most underutilized resource in healthcare. They believe that the knowledge gained through peer-to-peer interaction can improve patient care.
The publishers of the Journal of Oncology Navigation & Survivorship had the pleasure of speaking with Dr Zeiger about the creation of Smart Patients and the benefits of online health communities.
JONS To begin, can you please provide your definition of personalized medicine?
Dr Zeiger I think of personalized medicine as care that is tailored to a patient’s unique clinical and biological context as well as their personal preferences and goals. With the remarkable advances in cancer therapy, it’s easy to forget that the patient’s goals and social context are at least as important as the mutations found in their cancer.
JONS Can you share a bit about your background in healthcare?
Dr Zeiger I graduated from Stanford Medical School in 1999 and then did an internal medicine residency at the University of California San Francisco in their wonderful primary care program. Along the way, I also started working in digital health, initially building tools for the Palm Pilot. After practicing full time as a primary care and urgent care doctor for a couple of years, I went back to school to study medical informatics and learn more about software development. Since then, I’ve been a part-time urgent care physician and have been working full time in digital health.
JONS We’d like to hear about Smart Patients and the concept of online health communities.
Dr Zeiger For me, online health communities are about helping patients feel less alone and helping them learn from each other. Of course, this isn’t instead of providing them with the best healthcare possible. Rather, it’s about complementing great clinical care with social support that sometimes can only be provided by other patients and family members who have had similar experiences.
With Smart Patients, our goal is to provide safe, high-quality peer support so that patients and families can learn from and support each other. For many patients, the most useful thing we do is allow them to hear “You are not alone.”
We also believe that patients are the most underutilized resource in healthcare. We work closely with medical centers, both to offer their patients high-quality peer support and to help them learn from those patients via a variety of quality improvement projects.
JONS What was the impetus for establishing Smart Patients?
Dr Zeiger During my 6 years leading health efforts at Google, my most important job was studying the health questions people put in the Google search box and working to improve search results for those questions. One trend I noticed over the years is that an increasing number of people weren’t just looking for content—they were looking for other people with similar health experiences. I hired Gilles Frydman, a pioneer in online health communities, as a consultant to help us better understand this growing trend. I ended up leaving Google, and together we started Smart Patients.
JONS Can you talk about the benefits for a patient in joining an online health community?
Dr Zeiger The benefits are different for different people. Especially soon after receiving a scary diagnosis, many feel better hearing from others who have “been there” and can provide hope for the future. Many patients share how their illness and clinical experiences fit into the context of their lives and can help others do the same. That act of helping can be very rewarding.
Our communities are for family caregivers as well as for patients. Caregivers are often there to help ensure their loved one is receiving the best care possible, but they also need support themselves. I think our healthcare system isn’t as good at supporting caregivers as we are at taking care of patients, so peer support for family members can be especially helpful.
JONS How many different online communities does Smart Patients offer? How many of those are in oncology? Are there plans to expand to new communities?
Dr Zeiger We have about 60 communities, and half of those are in oncology. We actually started only in oncology and expanded into other areas more recently as demand grew. We create new communities quite frequently, and we do so in collaboration with medical centers or advocacy organizations. This helps us maintain the quality of the communities.
JONS How many members do you need to start a community?
Dr Zeiger We don’t need too many members to start a community, but we do need to nurture it carefully, especially early on. Most communities need to get to about 100 members to become sustainable, although much more important than the size of the community is the quality of the interactions.
JONS Can you discuss privacy and monitoring of the site?
Dr Zeiger It’s a huge responsibility to handle people’s health information. We use state-of-the-art security and have strict privacy practices. We also allow patients to learn from others without necessarily sharing any information. They can opt to just “listen,” and they can also use a pseudonym instead of their real name. It’s totally up to them.
Monitoring the quality of the conversations is critical, and I think it’s impossible to get this exactly right. We don’t pretend that we’re domain experts. Instead, we focus on creating a culture that is both respectful and pro-science, so that the community itself helps maintain quality and points out misinformation all while learning from the discussion. I believe a well-run community can do that better than any single expert. Our staff also facilitates and moderates as needed.
JONS How does a patient or caregiver join Smart Patients?
Dr Zeiger We build custom sign-up pages for our medical center and advocacy partners. In addition, patients and caregivers can join at www.smartpatients.com.
JONS What are the future goals for Smart Patients?
Dr Zeiger I think the biggest challenge and opportunity today is the shift from patients as passive recipients of care to collaborators in improving their health and the health of others in their community. We will continue to work hard on 2 fronts. First is providing the best quality peer support possible. Second is collaborating with medical centers to help them learn from their patients. I’m convinced that the best way to create an even better healthcare system is to codesign it with patients.
JONS Best of luck to you for continued success in empowering patients.
Dr Zeiger Thank you very much.