Incentivizing Social Search

The world is smaller than it has ever been. This observation reflects how the Internet and social media have strengthened our ability to connect with people and maintain those connections regardless of our physical distance. We have used social media to revive dormant friendships, make friends on the other side of the world, and expand our networks far beyond what was once possible.

Social media has also enabled us to document our connections, resulting in a “virtual rolodex”. We now have the ability to find almost anybody in the world through the mutual friends and connections that we have on Facebook, Twitter, LinkedIn, and Instagram, among others.

Stanley Milgram’s “Six Degrees of Separation” law states that we are between 5 and 6 connections removed from anybody in the world. So if my friend is 1 degree removed, and my friends friend is 2 degrees removed, I am only 3-4 more degrees removed from connecting with anybody in the entire world. This works because our networks grow exponentially with distance. In other words, if I have 100 friends, and each of those friends has 100 friends, my “2nd degree” number of connections is 10,000. My “3^rd degree number of connections is 10,000 X 100 = 1,000,000. There will be overlapping of friends, but it doesn’t take long to get into a number in the billions, which covers the rest of the world.

To have some fun with this idea, play the “Six Degrees of Kevin Bacon” game (link), which can connect Kevin Bacon to any actor in the world where each degree of connection is defined by two actors acting in the same movie together. I bet you can’t find an actor more than 6 degrees removed from Kevin Bacon! The Lexington Herald Ledger created a cool graphic that connects Kentucky celebs to Mr. Bacon.

While this is a cool phenomenon, how can we put it to use? Manuel Cebrian is a leading expert on using our social networks to find people and solve problems. He found that we can get people to participate in social search to find extremely hard-to-find targets by providing the right incentives. And the solution, while not immediately obvious, is elegantly simple and powerful! Read his story about how these elegant incentives create a powerful search tool that works by crowdsourcing people’s social networks (link).

We are inspired by Manuel’s work and are applying the principles of his research to find rare disease patients and connect them with advocacy groups and research opportunities. Hope you enjoy the read!

A Day in the Life of a Rare Disease Patient: Research

“I would be happy to take part in any research if it means future generations do not suffer.” – Patient, Ehlers- Danlos syndrome.

“Medical staff (when I asked) were either dismissive or were not aware of current research…” – Patient, mal de debarquement syndrome.

“There still isn’t enough being done to let people know there is a research project going on. I would not have known about the research projects related to my conditions if I had not been intensely proactive looking for it.” – Patient, spontaneous coronary artery dissection.

“Social media is being used as a tool for recruitment, and also through the internet there is opportunity for people to be proactive and find research in which they would be eligible to participate.” – Patient, Cowden’s syndrome.

Rare Disease UK published the results of a survey to 1203 individuals affected by a rare disease in January (link) to understand their realities. I will post summaries of four sections in the report: Patient Empowerment, Diagnosis, the Undiagnosed, and Research.

95% of rare diseases lack an approved treatment. That leaves an enormous unmet need for research within the rare disease community. Fortunately rare disease patients overwhelmingly support and participate in research. 80% of survey respondents indicated that they would participate in research, and another 15% were unsure, with only 4% stating that they would not be interested.

While enthusiasm for research is high, knowledge about research opportunities is very low, with over half of respondents indicating that they felt uninformed. Another half of respondents said that research awareness has improved over the past five years, much of that having to do with social media. However, patients are still often on their own when it comes to finding research opportunities.

“To find details about research you have to know where to look. Promotion and interpretation of the research relies on a few individuals and organisations.” – Patient, hereditary spastic paraplegia.

Our core mission at WeHealth is to provide a more effective way for getting these research opportunities to patients. Our platform engages the crowd – or YOU – to accomplish this. We have built an incentive structure in which you can get points for connecting a target patient with a research opportunity OR for sharing the message to a friend who successfully makes that connection. This method is a form of social search called “referral-based crowdsourcing”, and it has proven very effective for finding rare “needle in a haystack” targets.

WeHealth makes it incredibly easy for everybody to participate in advocacy. By simply sharing messages with your friends, you can become an advocate and help these patients in a very real way.

View other articles in the “Day In The Life” series: Patient Empowerment,Diagnosis, the Undiagnosed, and Research.