One day in the fall of 1906, the British scientist Francis Galton, a pioneer in eugenics and statistics, left his home in the town of Plymouth and headed for a country fair. On that particular day, it is said that Galton came across a weight-judging competition at the fair. A fat ox had been selected and put on display, and a gathering crowd of 800 people placed their guesses on the weight of the ox. The visitor with the best guess would receive a prize.
Galton wanted to know how the crowd would perform if it was judged as one individual. His initial experiments on breeding as a eugenicist had led him to believe that only a very few people had the moral and intellectual characteristics necessary to keep societies healthy. He naturally expected that a mix of a few very smart people along with some mediocre people and a lot of dumb people could only end up with a dumb answer.
The crowd’s average guess – the statistical mean across all participants – was a surprise to him. The crowd had guessed that the ox would weigh 1,197 pounds, whereas in fact the ox weighed 1,198 pounds. The collective judgment of the crowd was essentially perfect.
This story is told in the introduction of the James Surowiecki book, “The wisdom of the crowd” (2004); and online communities for healthcare are now becoming increasingly popular. Irrespective of the technology used, circles of ‘expert patients’, the newly diagnosed and long-term, and their caregivers whether highly qualified consultants or family members are increasingly engaging in e-patient networks.
However, leveraging the wisdom of the patient crowd is not easy. The platforms that seem to succeed create hubs offering patients the opportunity to ask questions in a supportive environment. Other patients and care-givers can answer and assist with their knowledge and experience. As platforms exceed a critical mass and become mainstream, the trend becomes more apparent. A good example is PatientsLikeMe, the generic rather than condition-led site, now boasting more than 200.000 users. Another up-and coming site is SmartPatients, a forum specifically for oncology which (thanks partly to one co-founder with a background at Google and a high-visibility TEDMED presentation) is becoming a visible force for hope. We spoke with Smart Patients co-founder, Roni Zeiger.
MC: Internet forums have been around since 1989. Why has it taken so long for concepts like forums to find their way into health and patient education?
RZ: Some online communities – like the ones Gilles Frydman helped create as part of ACOR – have actually been around since the early 1990s. I think the reason we’ve only seen online health communities gain more attention in recent years is because many people still think that healthcare professionals are the only good source of useful health information. The idea of peer-to-peer healthcare is still quite new.
MC: For a site like SmartPatients, is it a challenge to keep the questions and submissions relevant and of high quality for everyone else?
RZ: When Gilles first shared with me examples of conversations in his online communities for cancer patients, my reaction was: I don’t believe you when you say that these are patients. As a physician, I was surprised by the scientific content and tone of the discussions. Maintaining high quality will always be a focus for online communities, including ours, and I think the key is to build that into the culture of the community. Instead of having an expert moderator for every community, we aim to have other members of the community respectfully challenge questionable content, ask for references, and generate discussion that everyone can learn from.
MC: You have an extensive background at Google. How has that helped you to build this community of patients and caregivers?
Roni: I think the most important skill I bring from Google is how to iteratively improve software based on user feedback and how the software is used. This includes being willing to turn on imperfect features with the intention of updating them early and often. We ship a new version of our site every week.
MC: How do you engage with members and stimulate interaction? And most importantly, how will that help you to grow and scale the online community?
RZ: We mostly try to stay out of the way and let patients and caregivers learn from each other with a simple conversation platform. Instead of getting involved, we are listening carefully and building the tools they need to learn more effectively. For example, many conversations in our cancer communities are about clinical trials, so we built a clinical trial search engine that’s easier to use than clinicaltrials.gov It allows our users not just to find trials, but also to start conversations about them. I think that if we can offer easy-to-use tools that help patients learn from and with each other, we’ll have great engagement and attract new users.
MC: Is there a conflict of authority when patients become more knowledgeable than the medical professionals they go to for advice?
RZ: I know that there is a slow cultural shift where physicians are increasingly appreciating that some of their patients are unusually well-informed about their disease and treatment options. As a physician, I also know it’s also true that some of us would probably rather that patients stayed offline, as that makes our job easier in a way. It’s clear, however, that medicine needs to be more of a team sport. The science and the practice of medicine are evolving so quickly that no individual can keep up with everything. Motivated patients can help each other get better care, and can often help their doctors deliver better care.