--- "title": "Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious." "description": "Is \"peer-to-peer healthcare\" an idea whose time has come? Evidence and recent examples." "date": "2011-05-25" "authors": - "name": "Susannah Fox" "job_title": "Former Researcher" "link": "https://alpha.pewresearch.org/pewresearch-org/staff/susannah-fox/" "url": "https://alpha.pewresearch.org/pewresearch-org/internet/2011/05/25/peer-to-peer-healthcare-crazy-crazy-crazy-obvious/" "categories": - "Health Care" - "Health Policy" - "Healthcare Online" - "Medicine & Health" - "Social Media" --- # Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious. Here’s my simple definition of [peer-to-peer healthcare](https://alpha.pewresearch.org/pewresearch-org/internet/Reports/2011/P2PHealthcare.aspx): **Patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people. Technology helps to surface and organize that knowledge to make it useful for as many people as possible.** An idea whose time has come? Let’s think that through, beginning with an excerpt of Kevin Kelly’s post, [The Natural History of a New Idea](http://www.kk.org/thetechnium/archives/2011/04/natural_history.php): The notion that ideas have lifecycles has many antecedents. Various people get credit with first articulating it. Here is my version: **The Natural History of a New Idea:** 1\) **Outright wacko.** “This is worthless nonsense.” 2\) **Odd but unproven.** “This is an interesting, but perverse, point of view.” 3\) **True but trivial.** “This may be correct, but it is quite unimportant.” 4\) **Obvious.** “What’s new? This is what we’ve said all along.” Apply to your favorite example. I’ve seen this abbreviated to: “Crazy. Crazy. Crazy. Obvious.” But I think it’s more useful to pay attention to the gradations. Where along this scale is your idea? Pew Internet’s [research ](https://alpha.pewresearch.org/pewresearch-org/internet/topics/Health.aspx)has documented people’s interest in sharing what they know (the first part of peer-to-peer healthcare). I’d say we hover between “odd but unproven” and “true but trivial,” with the exception of some health digerati who have literally said “[duh](http://digital-pharma.tumblr.com/post/5450245910/what-will-hc-pharma-learn-from-the-pew-report).” Other researchers take patients’ and caregivers’ knowledge to the next level to make it useful. Four recent examples: 1\) Ian Eslick, a PhD candidate at the MIT Media Lab, posted his plans to harness patient-generated information to improve care. Specifically, he will “enable patient communities to convert anecdotes into structured self-experiments that apply to their daily lives.” Read the PDF: [Personalized health experiments to optimize well-being and enable scientific discovery](http://web.media.mit.edu/~eslick/eslick_phd_proposal.pdf). 2\) Kristina Doing-Harris and Qing Zeng-Treitler, researchers at the University of Utah, crawled PatientsLikeMe (with the company’s permission) to identify new health terms used by consumers as they discussed their conditions. Read the article: [Computer-Assisted Update of a Consumer Health Vocabulary Through Mining of Social Network Data](http://www.jmir.org/2011/2/e37/) (JMIR). 3\) Elissa R. Weitzman, Ben Adida, Skyler Kelemen, and Ken Mandl of Children’s Hospital in Boston created a privacy-preserving social networking software application for members of the [TuDiabetes community](http://www.tudiabetes.org/) to report and chart hemoglobin A1c values. Read the article: [Sharing Data for Public Health Research by Members of an International Online Diabetes Social Network](http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0019256) (PLoS ONE). And finally: 4\) Paul Wicks, Timothy E. Vaughan, Michael P. Massagli, and Jamie Heywood of PatientsLikeMe blew up the idea that double-blind randomized trials are the only valid path to clinical insights. Their study: [Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm](http://www.nature.com/nbt/journal/v29/n5/abs/nbt.1837.html) (Nature Biotechnology). I often think in metaphors and similes, so forgive the following summary: Eslick harvests clinical insights from naturally-occurring social networks, whereas Weitzman et al. created a farm and invited an existing community to work on it. Wicks et al. not only created a farm, but a community to work on it (as well as inviting other “farmers” along, like Doing-Harris and Zeng-Treitler). Then there is the question of scale: micro vs. macro vs. massive. To stretch the metaphor, Eslick is like a **mushroom hunter**, Weitzman et al. & TuDiabetes operate a **co-operative farm**, and Wicks et al. & PatientsLikeMe are an **agribusiness**. All of this research is moving peer-to-peer healthcare along the new idea scale. In fact, I’m having fun watching people’s reactions (*and mine*) when I describe these new studies: from indifference (*bummer, they don’t get it),* to puzzlement (*OK, we’re at least up to “odd, but unproven”*), to excitement (*oh good, let’s talk*). It speaks volumes to me that the *Wall Street Journal* [covered ](http://online.wsj.com/article/SB10001424052748704489604576283010994997034.html)the PatientsLikeMe study, for example, and other major news outlets did not. A nice [article ](http://searchhealthit.techtarget.com/news/2240035801/Ongoing-clinical-studies-show-new-value-for-patient-social-networks)in SearchHealthIT connected the TuDiabetes and the PatientsLikeMe studies and featured some intriguing quotes: > “We found this very high level of what we called ‘**information altruism**.’ People were willing, in a privacy-preserving model, to make individual decisions about how they were going to share their data.” – Elissa Weitzman > The word “altruism” jumped out at me, since it resonates with other observations of how people [stick around online health communities](http://e-patients.net/archives/2010/10/building-a-research-agenda-for-participatory-medicine.html) to help other people who come along after them. It also resonated with what Weitzman and Mandl found in a [previous study](http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2956225/): 9 in 10 patients using a personally-controlled health record are willing to share medical information for health research (under certain conditions). The other quote encapsulates the difference between PatientsLikeMe and every other online patient site I have seen: > “It’s easier to add a social network to a clinical research platform than to think about adding a clinical research platform to a social network.” – Jamie Heywood > But is that 100% true? Ian Eslick’s project is a potential proof that you *can* graft a clinical research platform on to an existing social network. When I chatted with Jamie about all this, he pointed me to Kevin Kelly’s mind-blowing “[Speculations on the Future of Science](http://www.edge.org/3rd_culture/kelly06/kelly06_index.html).” Here’s a quote, but please read the whole thing when you have time: > New tools enable new structures of knowledge and new ways of discovery. The achievement of science is to know new things; the evolution of science is to know them in new ways. What evolves is less the body of what we know and more the nature of our knowing. > My two favorite concepts in the piece are **Triple-Blind Experiments** (pattern recognition based on streams of data, collected unbeknownst to the population being studied) and **Wiki-Science** (massive collaborative research will be the first word on a new area). What if all the storytelling, discussions, and data-sharing among patients and caregivers could be coded, analyzed, and harvested for insights (as Eslick and Doing-Harris/Qing Zeng-Treitler discuss)? What if social networking data could join the “big data” party and allow public health researchers to engage in **syndromic surveillance**, as Mandl et al. presciently [described in 2004](http://www.ncbi.nlm.nih.gov/pmc/articles/PMC353021/)? Is that outright wacko? Or are these new scientific methods on the path to Triple-Blind Experiments? What if, instead of running clinical trials *on* patients, scientists ran trials *with* patients (a turn of phrase [used by Siddhartha Mukherjee](http://books.google.com/books?id=5rF_31RVTnMC&lpg=PA426&dq=emperor%20of%20all%20maladies%20rather%20than%20running%20trials%20on%20breast%20cancer%20patients%20the%20company%20learned%20to%20run%20trials%20with%20breast%20cancer%20patients&pg=PA426#v=onepage&q&f=false) to describe Herceptin trials and as Wicks et al. discuss)? Crazy? Or the beginning of Wiki-Science? What are your ideas? Where are they along the new idea scale? What are you doing to move them ahead to obvious – and is there a downside to getting there? *Please join the discussion on* [*e-patients.net* ](http://e-patients.net/archives/2011/05/peer-to-peer-healthcare-crazy-crazy-crazy-obvious.html#comments).