Health-Focused Social Networking Sites

This week we continue our social networking series, and we look at health-focused social networks.

Health-focused social networks function as communities for people with specific medical conditions (such as HIV/AIDS) and provide space for users to share their experiences, find support from their peers, and discuss their health concerns and treatment information.

A recent survey by the Edelman Trust Barometer Exit Disclaimer confirms that the most credible source of information for many people is now "a person like me"–surpassing public trust in doctors and academic experts for the first time. Visitors to health-focused social networking sites reflect that trend, reporting that they feel good about, and trust, their interactions with peers–more so than they trust other information they read online, and even more than they trust advice from their doctors.

(Note: These sites are not a substitute for professional medical advice.)

To learn more about health-focused social networking sites with HIV/AIDS communities, we talked with those involved in these communities, as well as with two of the country’s leaders in the field: Grant Wedner, the head of corporate development and partnerships at Daily Strength (DS) Exit Disclaimer, and David S. Williams, a co-founding executive of PatientsLikeMe (PLM) Exit Disclaimer.

Creating Community
"The immediate benefit for our members has been the ability to connect with people who have a common challenge in life, in a very personal, enriching, and lasting way," Grant says. "Some DS users are not comfortable talking to friends and family about their HIV status because of stigma or embarrassment, so DS becomes a place users can forge connections with people they trust–people who have been in their shoes, and can offer emotional support and advice. Our users belong to multiple communities. Truly, members are more than a diagnosis, and DailyStrength was built on this principle."

Chris, an HIV positive member of PLM, finds community in providing feedback and support to other PLM users living with HIV. "For me, the biggest value of PatientsLikeMe is connecting with people who have been recently diagnosed with HIV, because they all seem to go through the same emotions I experienced. Helping them has helped me sort out my feelings and helped me take control of my HIV."

The process of creating community for health-focused social networking sites requires feedback from patients, medical advisors, friends, family, caretakers, and supporters. Both DS and PLM conduct polls and surveys of their users to gather advice and suggestions. As always, successful new media tools are developed and maintained in partnership with users!

There are challenges to creating community, however. PLM’s David has found that a major hurdle for people joining many health-related social networking sites is being open about their health issues. At PLM, patients share their outcome, treatment and symptom information with others in the community.

"On our site, patients are sharing in-depth health information that would traditionally be kept private," David says. "People can chart their outcomes of care and treatment in the community and then share this information with their healthcare providers." Chris concurs: "I find it particularly useful to track my medications and viral loads over time. It’s also really nice to see what other people’s experiences are with particular medications and treatment plans."

David knows, however, that not everyone will feel as comfortable as Chris does with sharing that level of information in an open community. "We respect that," he says, "and we know our site is not right for everyone."

Health focused social network sites provide support to many. However, some people feel wary about them. For example, there are valid concerns about privacy issues (we’ll talk about that in future posts). Many of the ‘Facebook/MySpace’ generation tend not to be worried about anonymity–but they should be cautious about the potential for misuse/selling of personal information.

Andy Spieldenner, from the National Association of People Living with AIDS, notes, "There are certainly positive applications for social networking, but we urge consumers to find out how a particular site protects the confidentiality of the information they provide." He added, "As people living with HIV/AIDS, it is important that we know who owns the site and why it exists."

Before joining a social networking site–particularly one where you provide personal health information–it is important that you check out and agree to the site’s policies.

DS’ privacy policy states, "Our primary goal is to offer a secure place where you can reveal as much (or as little) as you choose to reveal about yourself and your life challenges as you meet and interact with other members." The site goes on to note, "We strongly believe in the right to privacy, and we will not sell, distribute, or otherwise abuse your personally identifiable information."

PLM has similar language in its privacy policy, while detailing the type of information the site collects from its members and how that information is shared with other parties. The policy reads, "PatientsLikeMe realizes that our website can only work if we build trust with our patient communities."

What Should HIV Providers Do?
Both Grant and David encourage HIV/AIDS service providers to look at how they can develop their own social networking presence. DS recently launched an integrated feature that allows individuals and private and public organizations to form their own groups. Grant says, "By forming their own groups, AIDS service organizations can directly reach several hundred thousand DS members. And by using our tools, these organizations can create their own social networks and galvanize their existing bases."

PLM offers a similar option. "We can set up organizational pages in our Partners section," David says. "Those pages will list your website, contact information, and can also include profiles for any members of your organization participating in the community."

At, we want to reinforce the fact that your clients and staff already trust information they secure on the Internet–so we urge you to find out what they and others are learning and how they are using that information. Then ask for their feedback.

As always, we encourage you to do your homework and explore health-focused social networking sites (including those we discussed here), and to learn from Chris’ experience. As he told us, "Until a year ago, I was totally alone. I am transgendered and living with HIV–and, at the time I found PatientsLikeMe, I was recently divorced and looking for support. I couldn’t find anyone else like me in ‘the real world’ and needed to talk about the impact HIV was having on my life. Through PLM, I have connected with some amazing people through social networking; it’s really become my community."

The team wants to thank Daily Strength Exit Disclaimer, PatientsLikeMe Exit Disclaimer, Chris, and Andy for taking the time to talk with us!

We’d love to know what you think of today’s post!