Google's former Chief Health Strategist Roni Zeiger MD and Gilles Frydman, founder of the Association of Cancer Online Resources (ACOR), announced the launch of , a new online community for cancer patients and caregivers, at the TEDMED event in Washington DC last week.
"What we are primarily trying to do is help cancer patients and caregivers learn more effectively from each other," Zeiger told Babyforyou.net.ua in an interview before his talk at TEDMED. "It turns out when people get sick or their loved ones do, within a couple of months they become quite expert in their illness and they are really motivated to help each other. That is a part of healthcare that we haven't really tapped into. We want that to happen more and we want the rest of the healthcare system to learn more from patients so that they can do a better job -- whether that's healthcare providers or pharma companies. There is an opportunity for us to learn more from and with patients."
Screenshot of Smart Patients' "Conversation Feed"
Smart Patients has been operating in closed beta for a few months with a group of invitation-only members. As of last week it is now open to all cancer patients and caregivers who can join the free site to search for clinical trials, discuss clinical trials, and start and follow conversations related to their disease. The site has re-architected the clinicaltrials.gov database to make it easier to search for and find relevant trials for cancer patients.
"We use clinicaltrials.gov everyday and appreciate it, but it is not very good." Zeiger said. "This is not something we planned to do initially but... we ended up building a next generation search engine for clinical trials with intuitive design and organized with filter option -- just like the kind of search you find at Kayak.com or Yelp."
As part of Zeiger's job at Google he, of course, spent a lot of time considering how Google might improve search results for health-related queries.
"When I was focusing on search at Google it became clear that for the more severe and rare side of medicine, which most cancers fall into, the static web pages that you can find through search often aren't enough," Zeiger said. "They are good for the initial one or two pager but when you need more information, specifically how this applies to my particular context, that's when learning from others who have particular expertise becomes really important."
Apart from finding clinical trials, Smart Patients community members can start conversations on any topic of interest and tag those threads with keywords that others can then follow. Since patients will be able to follow both specific conversations they find interesting and keyword tags, which could be commonly used by people with different types of cancer, Zeiger believes one benefit of the platform will be knowledge sharing and community building between patients who have different types of cancer. One feature that early users have requested but is not yet implemented is the ability to follow other people on Smart Patients.
Zeiger said the business model of Smart Patients is to work with partners, including pharma companies, and share with them anonymous insights and data from the communities. It has no plans to add advertising or marketing.
"For example, we might share a report about what issue lung cancer patients are most interested in over the last quarter," Zeiger said. "We also do voluntary surveys. One example is to give feedback about a draft design of a clinical trial that might be presented to patients as a summary of the trial or maybe share specific aspects of a trial that a client might want feedback on."
At launch, Smart Patients announced partnerships with The Bonnie J. Addario Lung Cancer Foundation, Cancer Commons, and WorldOne Interactive (which owns physician social network Sermo now). The company also announced that it is working with Oncosec Medical, which will look to include patient feedback from the Smart Patients community on the design of upcoming clinical trials for its skin cancer treatments.
"One of the lessons that personal health records [taught us] is that the question should not be 'What should a PHR look like?'" Zeiger said. "The question should be what do real patients actually need? I'm not sure what the PHR term means, I think it means different things to different people. One thing I think we need to do as an industry is get better at healthcare products. We need to get better at user-centered design and begin with users' needs and build from there and not necessarily build what the industry thinks patients need."