AIDS.gov Interview

Today I was quoted as part of a series on health social networks by AIDS.gov. The post has views from myself of PatientsLikeMe, as well as one of our community members. It's certainly worth the read, especially if you're considering joining a social network centered on a health issue.

As preparation for that piece, I was asked to answer a few questions--the answers to which I think add to the consideration for anyone looking to join a health social network. The focus is on people with HIV, but applies to people with any condition.

As always, comments or feedback welcome.

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1. What do you see as the value of niche social network sites as opposed to larger social networking sites, like MySpace and Facebook?

"Niche" social networks, like PatientsLikeMe, focus on people's particular health needs. We are not concerned with "links", "friends", or "feeds" as much as we're focused on gathering, structuring, and reflecting information that will improve the quality of life of people with life-changing conditions.

2. Do you prefer the word "niche" social networks or "communities of interest"?

Well, neither of those terms best describes what we do. Perhaps “collaborative network” would be most accurate for us. Yes we are a “social network” and we do create “communities of interest”, but we’re different. Patients share information (such as CD4 counts and viral loads) in order to learn from each other in a spirit of collaboration—to help themselves while helping others.

What separates us from typical social networks is that status or prestige is not measured by how many “friends” one has, or how many “hugs” one gives. Status on PatientsLikeMe is conferred to each patient by how much data one shares with the rest of the community. For example, a three-star patient shares a diagnosis date, is current with outcome, treatment and symptom information, and has provided a certain amount of historical outcomes data. This deep data sharing provides credibility to the patient for all interactions on the site. In essence, sharing data gives patients our version of “street cred”.

3. What was the impetus for starting the HIV community at PatientsLikeMe? How were patients involved?

Clearly there is a need for people with HIV to learn what works for patients like them. With virus mutations, numerous medication choices and combinations, and different stages of the disease, people need a place to learn from the collective experience of others. We target those types of disease communities in order to advance knowledge when conventional methods are either too slow or unavailable.

We opened the HIV community to charter members last fall in order to learn from patients how we could improve. We now have more than 600 charter members, many of whom have influenced new functionality and streamlined data visualizations to be more user-friendly.

4. What advice would you give to AIDS service organizations wanting to get involved with niche social networking sites? How can they get involved with PatientsLikeMe?

Our communities are free to join and open to all patients, researchers, doctors and nurses, and other industry professionals and organizations. For organizational partnerships, we can set up a page for you in our Partners section that list your website, contact information and more. The organizational page will also include profiles for any members of your organization participating in the community. We encourage any AIDS service organizations interested in this type of partnership to reach out to our marketing team.

5. What do you see as some of the benefits/challenges of social networking sites? PatientsLikeMe?

The challenge for people joining many health-related social networking sites is being open about their own health. On PatientsLikeMe, that issue can be confounded since patients share their in-depth health information that would traditionally be kept private. Some people don’t feel comfortable sharing that level of information in an open community, and we respect that.

The benefits, however, are astounding. Imagine knowing what everyone is taking for HIV and their outcomes over time. Each patient can then have a more productive dialog with his or her health care team in order to craft a customized treatment program based not only on clinical trial evidence, but also on the real-world experience of thousands. Doctors would have access to the range of dosages for every medication in real time, thus keeping on the cutting edge of prescribing practices. For many, the benefits clearly outweigh the risks.