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 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) , and David S. Williams, a co-founding executive of PatientsLikeMe (PLM) .

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!

Challenges
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."

Considerations
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 AIDS.gov, 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 AIDS.gov team wants to thank Daily Strength , PatientsLikeMe , Chris, and Andy for taking the time to talk with us!

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

To Blog or Not to Blog-Our AIDS.gov Journey Continues

Last week we told you we were going to do another entry on social networking sites--but we decided to preempt that post because we've reached an important anniversary, and we held a meeting about AIDS.gov's future. We want to tell you about both of those things, and get your input.

When we launched this blog in January, we said that after three months of posting and receiving your comments, we would evaluate whether the blog was meeting the needs of AIDS.gov’s readers, and then decide if and how the journey would continue. Well, the three months is up, and we want to pause and turn to YOU and our AIDS.gov planning body for direction:

• How are we doing?
• What could we do differently?
• What topics would you like us to cover?
• How well is this blog contributing to the fight against HIV/AIDS?

We have heard from some of you who have provided positive feedback about the tone and content. You have also challenged us to provide HIV-specific resources and personal accounts of how new technologies are changing HIV programming.

We've also turned to some of our Federal colleagues for their feedback. Last Wednesday, March 26, we held a meeting of the AIDS.gov Planning Committee. Members of that committee include leaders from across the Federal government who are responsible for the development, content, and management of Federal domestic HIV/AIDS web pages.

During that meeting, we learned of many key Federal resources and furthered our understanding of how Federal HIV/AIDS programs are working to assess how to adopt or effectively use new media tools to improve their programs. We also learned that our colleagues, like many of us at AIDS.gov, often struggle to learn what tools work best for them, how to evaluate these efforts, and how to secure buy-in from their colleagues. Throughout the meeting, we were struck by our colleagues' challenges and accomplishments and want to share some key themes with you:

• It's all about the users. In February, we discussed the importance of usability testing, and, in turn, conducted our own usability test of this blog. Many other Federal agencies are also doing usability testing. The Food and Drug Administration (FDA) told us how their Office of AIDS and Special Health Issues website has evolved in response to the demands and needs of their users. National Institute of Allergy and Infectious Diseases (NIAID) said they are renovating their site and focusing on the usability needs of their target audience.
• We're exploring new media. Through our podcasts, wikis, blog, and RSS feeds, AIDS.gov strives to use new tools to reach our audiences. And we're not the only ones. The Centers for Disease Control and Prevention (CDC) noted that they are using social networks on Facebook and MySpace; CDC also has regular podcasts. The National Institute on Drug Abuse highlighted the interactive elements of the Drugs+HIV site, which includes web banners and "webisodes," to reach diverse (and younger) audiences.
• Accessibility is key. Across agencies, the issue of accessibility and Section 508 compliance continues to be a priority (and a challenge). Veterans Affairs addresses accessibility issues by including alt tags with images in their drug dosing toolkit. The National Institutes of Health's AIDSinfo told us they have increased the reach of their Spanish site by not simply translating content, but by also culturally adapting the site for Spanish speakers.

We are grateful for the support of all of our AIDS.gov Planning Committee Members mentioned above, as well as the Office on Women's Health, the Office for Civil Rights, and SAMHSA, among others. They make AIDS.gov possible by supporting the site and working collaboratively to ensure that visitors to AIDS.gov have access to current content on Federal domestic HIV/AIDS programs, resources, and information.

We're pleased that the committee supports the blog.

However, we've challenged ourselves that we can ONLY continue blogging--as long as we clearly define how to best measure our success!

Our goal is to better define our progress by answering the questions at the top of this blog, and also asking ourselves, "How has this blog motivated others to engage in a dialogue on new media and HIV/AIDS?"

We can only do that if you tell us your stories about using new media.

So please keep (or start!) commenting. And, next week we promise to continue our series on social networking sites.

Conference Highlights How to Use New Media Tools

Last week, our Communications Director and New Media Strategist joined over 1,200 people from across the U.S. (and beyond) in New Orleans to talk about using new media to create social change and to share best practices. The occasion was the 2008 Nonprofit Technology Network (NTEN) conference, "Building Community: Connections Around the Globe and Around the Corner."

Although there were not any specific presentations on using new media in the fight against HIV/AIDS, we learned some important lessons about using and assessing new media tools that can help almost any HIV/AIDS program.

The following were some of the major themes of the conference:

Determine your audience's needs, then pick the appropriate technology. It's easy to get excited about the newest technology, but John Kenyon , nonprofit technology specialist, warned us, "Never start with the tools. Start with your needs."

"Never start with the tools. Start with your needs."

Katya Andresen from Network for Good and Mark Rovner from Sea Change Strategies talked about the human needs to consider when choosing the most appropriate new media tools for your work. Research shows that, to capture your audience, you must address people's needs to:

1. Be seen and heard
2. Be connected to someone or something
3. Be part of something greater than themselves
4. Have hope for the future
5. Have the security of trust
6. Be of service
7. Want happiness for themselves and others

Experimenting is important, but have a plan. Choose your technology wisely! Beth Kanter recommends, "Strategize, then experiment. Learn, then reiterate." Madeline Stanionis from Watershed talked about the importance of "stopping the silos" within an organization and encouraging different groups (Internet folks, marketing people, program folks, grassroots organizers), to plan collaboratively.

There are ways to measure the return on investment (ROI) of new media. Abby Sandlin of Charity Dynamics suggested that organizations start by defining the internal (organization-specific) value of using new media tools, such as blogs and social networks. This gets back to your strategy--and why your organization wants to use new media. Are you trying to raise awareness? Increase transparency? Engage your audiences/clients? Beth presented Forrester Research's framework that allows companies to track and measure the ROI of blogs . Justin Perkins from Care2 showcased an ROI calculator for social networks .

Social media tools take time. We were impressed by how many organizations have dedicated time and resources to making this happen. Carrie Lewis from the Humane Society of the United States and Danielle Brigida from the National Wildlife Federation both focus their time on implementing and evaluating new media at their organizations. At the American Red Cross , Wendy Harman monitors blogs and other online conversations on a daily basis to see what people are saying about the American Red Cross. She also spends much of her day joining these conversations (when appropriate) to let people know the American Red Cross hears their concerns. Wendy documents these conversations and reports back to her colleagues to help inform their work.

New media is about relationships. Beth Kanter emphasized that new media is about relationships and reciprocity. We've experienced this at AIDS.gov. We've reached out to our Facebook and MySpace friends over the last few weeks for this blog. We've connected with new collegues who have helped guide the development of our last blog post. They reminded us that new media tools are, "a new way to do old business." When it comes to the epidemic, it's about reaching people and developing relationships in the fight against HIV/AIDS.

These conference themes were not HIV/AIDS-specific, but they are key factors to think about when assessing if and how your HIV/AIDS program should be using new media tools.

Next week, we will continue to discuss social networks.

National Native HIV/AIDS Awareness Day

March 20 is National Native HIV/AIDS Awareness Day.

American Indians and Alaska Natives (AI/AN) are ranked third in the nation in the rate of AIDS diagnosis compared to all other races and ethnicities.

The National Native American AIDS Prevention Center (NNAAPC), Colorado State University's Center for Applied Studies in American Ethnicity (CASAE), and Inter Tribal Council of Arizona, Inc. (ITCA) organize and implement the Day.

To learn more about this day, please visit the IHS HIV Program website.

To locate a testing site near you, please visit www.hivtest.org.

Face Time with Facebook

This week, we're continuing our series about social networking sites . Today we're focusing on Facebook .

To learn more about how we might use Facebook in the fight against HIV/AIDS, we spoke to Shaun Whybark from the Columbus AIDS Task Force , and Dmitriy Kruglyak from TrustedMD .

What is Facebook?
Facebook, like most social networking sites, allows users to create online profiles (including photos, information about themselves, etc.) and then connect to other people with similar interests and experiences. Mark Zuckerberg developed Facebook in 2004, while he was a student at Harvard. He saw Facebook as a way for students to connect with each other. In 2006, he decided to open up registration so that anyone could join. Facebook is now the second-most popular social networking site (after MySpace ) in the U.S., with over 28 million monthly visitors, and its popularity is growing. The site's monthly traffic has increased 77% since last year.

How is Facebook similar to (and different from) other social networking sites?
Most often, people compare Facebook to MySpace. On both sites, users can create profiles, upload photos, share information, and send messages. There are several features that set Facebook apart, however. One is that Facebook limits how people can customize and change the appearance of their profiles. This means that Facebook profiles are more standardized, but may lack the personalization offered by other sites.

Facebook also has many other features (with more being added), such as:

• News Feeds are updates about your friends' activities on Facebook. Whenever someone posts a photo, makes a new Facebook friend, or uploads a like, all their friends receive that information on their news feed. For example, when AIDS.gov uploads a new podcast to our Facebook page, all our friends are notified with a link to our Facebook profile.
• Status updates are used so people can let their friends know what they are thinking, doing, or feeling. Like any other activity, it is automatically updated in friends' news feeds. Shaun keeps his Facebook friends engaged by changing his status daily. When we looked at his status, it read, "Wants to remind everyone that you can get tested Tuesday from 3:30-7:30pm Tuesday and 10am-2pm on Wednesday! By appt Monday/Thursday. Get tested! Know your status!"
• Groups are a key organizing tool for organizations, shared interest groups, grass-roots campaigns, and causes. Groups can be completely private: they do not appear in searches, their news feeds are not shared with non-members, and their pages cannot be seen by anyone not explicitly invited to the group. Messaging on Facebook is quite sophisticated, and groups use it as an organizing tool and as an alternative to mass-mailings. We recently found over 500 AIDS-related groups, many of which are for special events and fundraising walks.
• Applications are mini-programs that people can use on their Facebook profiles. Since May 2007, when Facebook announced "Facebook Platform," which allows developers to create applications for Facebook, over 18,000 have been built, and 140 new applications are added each day . Several applications are HIV/AIDS-specific, such as an application that allows you to add a red ribbon to your profile, or (Product) RED's "Card for Africa" to raise awareness about AIDS in Africa. It doesn't end there, however. Earlier this year, Facebook announced that, in addition to being able to create an application specifically for Facebook profiles, the applications can now be easily embedded into other websites. Dmitriy told us, "What makes Facebook different is the ability to create your own applications that members can install on their profiles and spread to their friends. MySpace is catching up, though."
• Causes were developed by Project Agape to allow networks of firiends to promote fundraising campaigns for a particular cause. You can raise awareness while raising money!
• Pages are different from individual profiles. Businesses or organizations can create Facebook pages, and individuals can express support for the work an organization does by adding themselves as a "fan" of that page. Pages are great for nonprofit organizations--you can send regular updates to your fans, and--just like Facebook individual profile pages--you can add applications and engage users with blogs, videos, reviews, events, messages, and more.

Facebook and HIV/AIDS
When we asked Shaun if he thought AIDS service organization should use Facebook, he told us, "Where are young people going to get your information if you're not on Facebook or MySpace?" He continued, "We needed a way to get events, awareness, and testing hours to that population. What better way to do that than online outreach?!"

At AIDS.gov, our Facebook page helps us connect with HIV/AIDS service providers and their programs. We also use Facebook to highlight HIV/AIDS Awareness Days and our AIDS.gov program, including this blog. Our goal is to expand our community and share information about Federal HIV/AIDS resources. We are just beginning to learn if Facebook and other social network sites can help us meet those goals.

Should you be on Facebook? That depends on your own organization's goals and resources. Setting up a profile, page, or group doesn't require any technical expertise. While there are many benefits--like reaching a broader audience online--as with any social media efforts, it takes time and resources to really engage your audiences. You have to be prepared and able to update your profile often.

A Note of Caution
As we mentioned last week, it is important to remember that social network sites are public. While Facebook has different privacy settings, remember to be mindful about the information you post to your profile. [added 3.18.08: Facebook just introduced privacy updates that will provide users with more control over the information they choose to share].

Getting Started
To learn more about getting started on Facebook, here are some resources:

• Facebook's very own help pages provide a lot of information about basic features.
• TechSoup has several good articles about getting involved on Facebook, such as A Beginner's Guide to Facebook and Promote Your Cause on Facebook in Six Easy Steps

Next week we'll report back from the Nonprofit and Technology Conference in New Orleans, LA. Then we'll continue our social networking series with a focus on smaller, niche social networking sites.