Participatory Medicine:
Using Twitter to maximize serendipity in a social network

An ESUN Article

Gilles Frydman
Founder & President
Association of Cancer Online Resources (ACOR)

The ACOR Model and Experience of Sharing Information

Every day patients suffering from rare conditions experience the online version of the traditional "finding a needle in a haystack" problem. Finding relevant information is at best difficult if not outright impossible for too many people. In many cases it is possible to find some static information about the condition on a major hospital or governmental website, such as the National Institutes of Health. But, where do you turn to find the latest news and scientific discoveries that are of specific interest about the condition? If you are lucky you are already a member of one of the old and established social networks available on the Internet. If you are not, your ability to get current information is almost nil, unless you are a medical librarian or have received active help from one. Too many people are still denied access to this information which often appears in medical journals.

Most of the truly amazing and life-transforming events that have taken place through the ACOR system over the last 13 years have been a result of serendipity. This applies particularly to all of the groups dealing with a rare disease. Conversations with long term observers of these social networks confirm the importance of serendipity in all of them. Suddenly, by gaining access to a bit of information located in the archives or sent by a member of the group, someone else may make a "connection" with something said earlier by another member. This serendipitous "connection" could have a deep influence on an entire group of patients.

This serendipitously finding of relevant and significant information is almost in complete opposition with the way health professionals have been taught their specialties. This non-linear and non-Cartesian way to get knowledge "out of the box" explains why members of the ACOR communities have been well served for many years. ACOR was built from its origin with a non-hierarchical structure. We planned a "cooperative" of cancer online communities to offer cancer patients many tools to share what only a minority of contributors could find. Our mission has consistently been to find tools to end the ill-fated rationing of medical information to lay people. By definition, if it is of value to physicians, it could be of value to any or all of their patients and caregivers and should be made freely available. Participatory Medicine can only happen when there is a true symmetry of knowledge.

Our archives are a true gem but access to them is difficult. The search engine integrated with the Listserv software is cumbersome and the results it produces are far from what a generation bathed in using search engines such as Google is used to. Nonetheless, over the years, some of our users have found references to very hard to find information, including early clinical trials, new tests, specialized doctors and peers who have had very similar experiences.

Encountering Twitter

Noticing that these encounters with unexpected pieces of information have resulted many times in life-changing choices, I have been on the lookout for tools that could optimize serendipity. For years ACOR has provided what was then easy access to the latest scientific abstracts for every type of cancer. We have also run a cancer news aggregation service for many years. This useful service has received very little coverage and the number of users has been consistently and disparagingly low. Different strategies have been used on the ACOR website to raise the awareness of our users, including putting a variety of links across the site to these dynamically generated pages. Nothing has worked.

A year ago I was directed to this new service, and told it was the latest darling of the West Coast tech intelligentsia. This new website had a definitely funny name, Twitter, and a deceptively simple website. It is a microblogging service with an absurd text limit -- it accepts messages that must be less than 140 characters long. A person accustomed to writing long posts to the ACOR mailing lists and to the e-Patients.net blog, can find this extreme limit a severe handicap and deter their interest in this new service. [Ref 1]. Not being able to find what the frenzy was about Twitter, I made a single micro-post and like many people never wrote again. A few months later I read about Twitter’s impressive growth and decided to have a more in-depth look at the universe developing around it. I found a fast growing number of Twitter clients and applications allowing you to organize what looks at first hand like a useless, puzzling noise-generating website for teenagers used to sending text messages to their friends [Ref. 2].

Twitter: What is it and how does it work?

Twitter is a free social messaging utility for staying connected in real-time. Users can send and receive updates (the 140-characters messages), also called tweets, via the Twitter website, SMS, RSS, or through a growing number of applications such as TweetDeck, Twhirl, TwitterMobile, Tweetie, Twinkle, Twitterrific, Feedalizr, Facebook, Twidget, a widget application or even Twitterfox, an add-on for Firefox (see below for links to Twitter tools and applications.). Four gateway numbers are currently available for SMS: short codes for the United States, Canada, and India, and a United Kingdom-based number for international use. Several third parties offer posting and receiving updates via email.

Twitter usage growth is phenomenal -- from 300,000 users in July 2007 to 1 million in April 2008 to 5 million in September 2008. The company just announced a 900% yearly growth curve of the number of active users. It has clearly become a major social network and provides benefits to many of its users who spend large amounts of time writing these micro-posts. In this time of extreme financial difficulties when venture capital firms are refusing to fund most projects, Twitter just closed a very large round of venture capital funding guaranteeing its viability [Ref. 3]. The current funder, Todd Chaffee, wrote:

Our model is to find the winners and market leaders that are going to grow at a disproportionate level. Twitter falls in that category. Twitter is bigger than a lot of people realize and growing faster than a lot of people realize, but it has not hit the mainstream yet. It is just starting…. [Some people say] Twitter is whatever you want it to be. But at the end of the day you have this open, one-to-many network, and to enable that is this platform. … The reality is that it is a network/platform which has millions of users and thousands of applications. Twitter does three things. It facilitates social connections with friends, colleagues, writers, and celebrities. The second is knowledge transfer. It is a real-time mechanism for tapping the wisdom of millions of people. The third is social expression. It is a mechanism for the global community to express itself.

Chaffee added "Twitter is Open, Real Time, Ubiquitous , Scalable & Persistent. It is the only service we’ve found that has all of those things. None of the other things out there, Facebook, YouTube, LinkedIn, has all of those variables. That is why Facebook tried to buy them" [Ref. 4].

Twitter is accelerating human connections and how it is done needs to be understood. Twittering forces you to change your writing style. Many, if not most, of the tweets include a link to another internet resource, such as a blog post, a PDF file, an image or a YouTube video. This link is part of the 140 characters and Twitter has forced the explosion of the number of URL shortening services. With a minimum of 17 characters per link you can count on having about 120 remaining usable characters to write an interesting message. The short format of the tweet is a defining characteristic of the service. Surprisingly, it facilitates informal collaboration and very fast information sharing and provides relief from rising email and IM fatigue. A growing number of journalists are using Twitter because they have noticed that news events appear faster on Twitter than anywhere else. Twittering, because most of the exchanges are public and broadcast , is also a much more democratic method of communication: you can share information with people that you wouldn't normally exchange email or IM messages with, opening up your circle of contacts to an ever-growing community of people who share your interests. You can follow the posting of many luminaries that use Twitter with a passion (see list of luminaries blow).

Your tweets are displayed simultaneously on your profile page (see the example of my personal account [Ref. 5]), on the home page of each of your followers, and in the Twitter public timeline (unless you disable this in your account settings). Over 85% of Twitter’s active users are happy to have their updates public as this is the most effective means to publicly broadcast your opinions and discoveries.

The exponential growth of Twitter is principally due to the development of a series of APIs. The traffic through the various APIs is now twice the traffic through the Twitter website [Ref. 6]. Twitter is fundamentally a Web 2.0 application. It is essentially a new communication protocol with its own specific set of rules. It offers a very powerful platform to freely broadcast specialized information. It can further our dream to bring free medical information out of its current publishing limits.

Twitter: How do people use it?

Twitter has many uses for both personal and business use. It's a great way to keep in touch with your friends and quickly broadcast information about where you are and what you're up to. Many users send mundane tweets like "I'm going to twitter meetup and aching for some pizza. Anyone interested to share?"

But, it is also used by many professionals to promote their ideas and share what they are reading, learning, discovering or inventing. Many of the big tech names are actively using Twitter in this fashion. For example, Cory Doctorow, sent the following tweet yesterday: "If content is a river, DRM is a urinary tract infection, delivering the flow in a painful drip #toc". Similarly a growing number of young influential doctors are using Twitter to let their constituency know of their latest writing . See @kevinMd. a practicing primary care physician known as one the best medical bloggers. or @AllergyNotes, an internist, specialized in allergies & immunology and NEJM advisory panel member.

It is this use of Twitter that got me interested. I could suddenly see how it could be used as the missing broadcasting tool for the ACOR cancer scientific updates. Just imagine that, with a single click, you can receive at no cost instant notification of a new scientific abstract or piece of news that relates specifically to your disease. ACOR is now doing exactly that. Producing over 150 specialized Twitter feeds, we are letting non-ACOR subscribers gain access to the information delivered until now only on the ACOR website. In addition, a general cancer news channel has been sending updates for a little less than 3 weeks.

In order to better understand the nature of Twitter, a choice was made to not make any public announcement about this service. Nonetheless, by the time this article appears in ESUN we will have reached well over 200 followers. And the trend is accelerating. The early adopters of the service were mostly executives of various cancer advocacy organizations, showing that health and advocacy professionals using the system pay close attention to the twittersphere. One mark of the success of a Twitter user is the reposting of his/hers tweets, a process called ReTwitting and marked either RT or Via, as in "RT @cancer_news: (2/5) New evidence of hormone therapy causing breast cancer, Stanford professor says - http://is.gd/jAQt". The @cancer_news feed is being RTed a little more every day, showing that its followers find value in it. Just imagine the potential number of followers of this service as soon as we start making public announcements about its existence.

Once each of the feeds has a significant number of followers we can imagine starting a tighter integration of the feeds with the existing ACOR listservs. The cancer feeds interrogate the central PubMed database every half-hour with custom queries for each disease. The queries are prepared by an algorithm taking into account the rarity of the disease and the historical number of articles published about it over the last few years. Most of these queries require access to the PubMed advanced search page. The cancer feeds, instead of requiring real proficiency in the querying of PubMed provide very easy access to the latest relevant information. For an example see @breastcancer09 or @leiomyosarcoma.
You can already see potential uses of these feeds that are significantly augmenting the chances you’d discover a "hard to find" connection. The ACOR page has a small example of what we can expect as the feeds add content to the central Twitter content. If you do a search for Sorafenib in Google, the first information you’ll read is the following: "Sorafenib (Nexavar, Bayer), is a drug approved for the treatment of primary kidney cancer (advanced renal cell carcinoma) and advanced primary liver cancer (hepatocellular carcinoma).". If you do a similar search in Twitter you will get the following results:

In an instant you are able to see that Sorafenib is now in use for at least 2 other types of cancer. It is this kind of findings that the ACOR cancer feeds will bring to people in an instant, surely maximizing the chance that serendipity will be of use to many more cancer patients. As the cancer feeds continuously add highly focused quality content it is probable that the internal Twitter searches will consistently return results that will be of real clinical benefits to people in need. I plan to write an update about this project in six months.

Because Twitter is really a communication protocol, it is very easy to get completely lost in this sea of seemingly unrelated human exchanges, mixing lectures and small talk like they were one and the same. The next application we will introduce will help alleviate this problem by creating a live directory of all health related twitter users. The application will follow in real time all the content from these "HealthBirds" and will organize their conversations in easy to follow webpages. For example you’ll be able to follow what all the hospitals who have a Twitter account have been communicating in the last few days .

As this service grows I am convinced we will see many more potential uses to free information.