Social media & networking

Patients like me

I’ve mentioned Patients Like Me in a few of my presentations as a great example of a couple of the principles of social networking.

Patients Like Me is a community site for people that have serious illness; a place where such people can share stories and experience, provide support, and also provide information about treatments they are undertaking.

Leveraging the network

In his talk entitled Leveraging the network, Joshua Porter outlined a number of principles of successful social design. One of them is the idea that successful sites provide personal utility first, and derive social value from the fact that lots of people are using the service.

Patients Like Me is interesting in that the “personal value” is actually the community’s peer support and the ability to learn what treatments are working/not working.

Crowdsourcing

A form of “network leveraging”, crowdsourcing is the practice of utilising a community’s activity to generate organisational value.

Patients Like Me provides community and organisational value by essentially crowdsourcing treatment efficacy – essentially informal clinical trials.

The information that people share within their community in aggregate has potential to create a tremendous resource to doctors, academics and patients in getting a sense of which treatments are most effective – not only in terms of the health results achieved, but also in terms of patient experience.

It’s personal

However, the most powerful thing about the site, in my opinion, is the community aspect. At a (semi-)theoretical level I often talk about “community” and such – but the power of Patients Like Me only really struck home when a friend of mine was recently diagnosed with Multiple Sclerosis (MS).

When I first got the news I didn’t even know how to respond. While I know it’s fairly serious (in my friend’s case it seems symptoms are very mild at present) I know very little about the disease and, as a friend, very little in the way of how to provide support.

About a day or so after, however, I remembered Patients Like Me. I checked the site and found that an MS community had already formed on the site (515 patients at the time of writing this post).

So I was able to pass this on to my friend so that they may be able to share and learn from other’s experience. (As an aside, I’d like to see a similar site for complementary medicine, and perhaps another to help friends and family provide support for their loved ones.)

Community

Which cuts to a key point that I try to get across in my workshops and consulting work – the community and their needs must come first in any strategy. Patients Like Me provides authentic value to the communities that form there and to others that will join the community in time. That they can derive organisational value from the site is a benefit that comes second (although important for the long-term success of the site).

Community is the core – miss that in your thinking about social networking and you miss the opportunity that social networking embodies.