Highlights from Health 2.0: User-Generated Healthcare 2008

Last week, over 1,000 healthcare and technology industry leaders met in San Francisco for Health 2.0: User-Generated Healthcare 2008 . The conference co-founders, Matthew Holt, author of The Health Care Blog , and Indu Subaiya, MD, packed the two-day event with many presenters and panel discussions on “Web 2.0 technologies, healthcare, and all points between.” This post will share just a few of the many highlights from the event which we found particularly relevant to HIV/AIDS service providers.

Patients Want to Guide Their Care

Matthew opened the conference by talking about the key features of Health 2.0: “personalized search; community; tools for content delivery; and better integration of data and content,” along with “patients guiding their care.” Throughout the conference there were discussions and demonstrations of tools to help patients manage their health, such as WebMD , Microsoft’s HealthVault , Google Health , Aetna , and Yahoo! Health .

Health 2.0 Continues to Grow Domestically and Abroad

A new documentary, The Great American Motorcycle Health 2.0 Tour , premiered at the conference. For the film, David Kibbe, MD, MBA, and advisor to the Center for Health Information Technology at the American Academy of Family Physicians interviewed experts on the latest Health 2.0 innovations going on around the country. Most of the experts in the film also presented at the conference. They represented sites like American Well , PatientsLikeMe , the NYTimes “Well ” blog, Hello Health , CVS Minute Clinic , Change Healthcare , MedHelp , and Kosmix .

Mobile research and applications were among the tools highlighted at the conference. Deb Levine of ISIS showed us a tool that allows mobile users to text “HIVinfo” to “61827” and receive HIV-prevention information in return. Kevin Noland, CEO of ADAM , showcased an iPhone application that searches health information and uses the phone’s GPS capacity to locate a doctor who can treat particular conditions. Dr. Jay Bernhardt of the Centers for Disease Control and Prevention commented that, of all the new media tools, “mobile has the greatest potential public-health impact -- giving the ability to reach across all groups.”

“Gaming in Health Care” Session at Health 2.0

Meeting the Needs of Patients and Providers

Conference speakers also gave important reminders and advice. Doug Solomon of IDEO focused on the need to understand end users: “We can’t do it from the office with the door closed, looking at a computer--we need to be a part of their lives.” James Matthews of Sage Software emphasized the importance of starting with “the passion to deliver healthcare and then find the right technology.” Bill Crounse, from Microsoft , discussed the need to find a way to reimburse providers for delivering information to patients “how, when, and where people need it.”

Looking Ahead

The growing number of new media tools and Health 2.0 initiatives offer endless possibilities for linking and engaging people with HIV/AIDS prevention, testing, treatment, and support information. But first, we need to learn what our users want (and continue to check in with them along the way). And we need to continue to share our “lessons learned” with each other. As Robert Kolodner from the Office of the National Coordinator for Health Information Technology stated in the closing session: “We have the tools and are beginning to learn how to use them, but we need to continue to have a ‘network of networks’ where knowledge is shared.”

At AIDS.gov we are working to create a “network of networks” by developing an HIV/AIDS Awareness Day Cross-Promotion Group that consists of government and community partners. We use this group to share information, tools, and the new media lessons we have learned. As Michael Ruppal from The AIDS Institute (which coordinates National HIV/AIDS and Aging Awareness Day ) told us: “The AIDS Institute is proud to be part of a national network that is committed to promoting comprehensive HIV/AIDS awareness. Since HIV/AIDS impacts so many lives on a daily basis--not just one or two days a year--it is important that we have promotional events, activities, announcements, and educational materials that keep these highly complex health issues at the forefront of everyone’s agenda throughout the year.”

Michael continued by saying, “This network has helped educate the community and media and is a trusted source of information about the impact of HIV/AIDS on the populations that are most affected. The AIDS Institute will continue to use our resources to work closely with the network partners to promote and educate everyone, until there is no more need for us to do so.”

Want to Learn More about Health 2.0?

Intrigued by the examples and tools we’ve listed here? Check out the Health 2.0 Blog , Icyou Health 2.0 video channel and the Health 2.0 Facebook group to learn more and continue the dialogue. And save the date for the next Health 2.0 Conference on April 22-23rd, 2009 in Boston!

Did you attend Health 2.0? If so, how do you plan to apply what you learned at the conference to your work?

Looking Back, Moving Forward

Last week we attended the United States Conference on AIDS (USCA), sponsored by the National Minority AIDS Council (NMAC). USCA is the largest AIDS-related gathering in the U.S. Three-thousand people came together to share information, create new networks, and learn about the latest tools being used to address the challenges of HIV/AIDS. Conference participants included healthcare and service providers, advocates, people living with HIV/AIDS, and policymakers. The theme of the conference was “Looking Back, Moving Forward.”

New Media at USCA

Our time at USCA was spent looking forward to a future where new media will be a standard part of HIV messaging--but we aren’t there yet. Below, we highlight some examples of how our colleagues are using new media to reach target populations at risk for HIV/AIDS:

Plenary Session

• The USCA conference opened with the Soy (I am) project, a joint venture between Univision and the Kaiser Family Foundation (KFF). Soy tells the stories of individual Latinos living with HIV/AIDS. The project debuts just in time for National Latino AIDS Awareness Day. KFF also provided a webcast of USCA’s opening session.

Workshops

• Thomas Henning, from Cable Positive , discussed how nonprofits can use new media to reach new clients. He discussed how to find free or inexpensive resources to help with using new media tools and highlighted Cable Positive’s popular, rights-free, public service announcements .
• The Northwest AIDS Education and Training Center (NAETC) offered a workshop entitled Employing Innovative Technology in HIV Clinical Training for Underserved Communities. NAETC has a useful website that provides case-based modules on HIV/AIDS diagnosis and treatment for minority and minority-serving health care providers.
• The Los Angeles Gay & Lesbian Center presented on a new web series, In The Moment , that follows a group of gay men living in Los Angeles and chronicles their decision-making around sexual health.

Roundtables and Discussions

Participants at AIDS.gov discussion, counterclockwise: Deb LeBel, Valerie Kapp, Michael LaFlam, Angel Gonzalez, and Doug Weinbrenner.

• Miguel Chion and Monica Nuño of Accion Mutua , a joint program of AIDS Project Los Angeles and the César E. Chávez Institute , offered a roundtable on how to use webinars to reach communities with HIV prevention, testing, and treatment messages.
• AIDS.gov sponsored a discussion group entitled “Let’s Talk About New Media.” Participants echoed what we heard at the International AIDS Conference and from others at USCA: our target audiences are using the Web to find health information and make healthcare decisions.

Other New Media

• amFar and POZ are producing videos for their webpages, and YouTube carries a video by POZ on Latino and Asian/Pacific Islander HIV/AIDS Awareness Days.
• NMAC twittered from the conference. (To learn more about Twitter, see this post.)

Interviews

As we did in Mexico City, the AIDS.gov team did informal interviews with USCA participants about their use of new media. The consensus among our colleagues was that people are starting to incorporate new media into their work, but the challenges are real and there is plenty of room for improvement.

Doug Weinbrenner, from Good Samaritan Services in Kansas City told us: “We are just skimming the surface of what we can do.”

Susan Cohen, director of the Los Angeles Gay & Lesbian Center’s Department of Health Education and Prevention, and part of the team that produces In The Moment , said “We are continuously learning from our audience about how to plan for this new environment. That means considering everything from what to do when the computers start crashing to asking ourselves hard questions, like ‘Are we serving our audience?’” She also said, “The HIV community needs to assess the utilization of new media. Our target audiences are using these tools and we have to meet them where they are.”

Monico Nuño, Capacity Building Specialist, Acción Mutua

Monica Nuño told us, “So many of those we work to reach use technology in their social lives. We use technology tools in our work to bridge the gap between home and work, bring information to people, and make it interactive. We have to meet providers where they are and make our information available on the platforms they use.”

Gustavo Aldolfo Morales Correa with Entre Amigos told us: “We’ve been engaging clients on MySpace in Puerto Rico for several years, but we know we have to step up our game. Our clients began by networking through us, but they quickly developed independent social networks—we have to reconsider how to engage with them.”

Moving Forward

Our colleagues (AIDS service organizations, health leaders, and national HIV advocates) told us they wanted technical assistance on how to use, evaluate, and work collaboratively on new media. They also told us they want more opportunities to TALK about using new media - and how we can challenge our communities to use these tools, as appropriate.

What are you doing to make your HIV/AIDS information and resources available through new media? Please share you stories, successes, and challenges with us!

Share, Listen, and Learn

Last week, the New Media Expo took place in Las Vegas, Nevada. The Expo brought together 2,000 attendees, including individual media makers, companies, schools, and organizations wanting to learn how to create audio and video content that will educate, inform, and inspire their audiences. The AIDS.gov team was there to learn, listen, and share our own stories.

Sharing

Fred Smith, Senior Technologist at the CDC

On Thursday, Miguel Gomez, Director of AIDS.gov, and Fred Smith, Senior Technologist at the CDC, presented a session on creating podcasts within the Federal government system. They shared what it takes to get cooperation from various departments, how they plan their content, and how they use audio and video podcasts to disseminate information to the communities they serve.

Listening

But more important than what Miguel and Fred said was what they heard. Miguel asked Tim Bourquin , Founder and CEO of the New Media Expo, what message he would like to share with the HIV/AIDS community. He said, “I’d recommend just getting started. Interviews are the easiest way to get content up quickly, and they keep the host from having to carry an entire 15- or 20-minute show. Interview people within your organization but also reach out to the people you serve who have interesting stories to tell and interview them as well. Anything that helps you connect with your audience in a more ‘human’ way will be well received.”

Anything that helps you connect with your audience in a more “human” way will be well received.

Tim Bourquin, Founder and CEO of the New Media Expo

We also asked Tim the lessons he learned from this year’s expo. He told us, “The big lesson from the 2008 New Media Expo is that individuals and organizations can still connect with their constituents directly by starting a blog, podcast, or online video series even if they don’t create media as their primary business. Although production quality matters, being genuine with your audience and putting a human face on any organization is what’s important. With the tools becoming less expensive each day, and editing software becoming easier to use, anyone really CAN do this.”

Fred told us his take-away message was that “we have proven that podcasts are an effective channel for delivering health messages, and we have learned a lot in the process of developing those podcasts. Now it’s time to take our podcasting to the next level by being strategic and creating more personalized podcasts.” Fred said the CDC is planning to allow users to personalize their experience with CDC podcasts---with options like subscribing by topic rather than by predefined series, receiving podcasts that are geographically relevant, and opting for supplemental material to be delivered through a subscription feed.

Learning

The Expo was an opportunity for us to meet new colleagues like Pete Alcorn, Manager of Podcasts at iTunes for Apple, Inc., and Michael Geoghegan . We went to several presentations and learned of many new resources, including:

• Edison Media Research/Arbitron has national-level data on podcast listeners and their demographics, trended since 2006.
• Rachal Salaman from Audio For the Web presented on writing for podcasts and has some case studies on her site.

The growth and evolution of new media is changing everything - even conference organizers’ thinking about the future of events like the New Media Expo. We encourage you to read Tim Bourquin’s and Chris Brogan’s blogs to learn more.

Our ability to network with leading podcasters at the Expo led to specific, positive outcomes for AIDS.gov. As a result of our participation at the Expo, AIDS.gov is now working on HIV/AIDS messaging with a college in California and a community health provider in Vermont. We would never have met our colleagues in those organizations without the Expo. As Chris Brogan said, “there’s a lot to learn, many connections to be made, and many new people coming into the social media space every day.”

Were you at the New Media Expo? Or have you attended a conference or workshop lately that you’d like to share with us? We welcome your feedback!

"Engage and Deliver" But Don't Forget to "Listen and Learn"

Last week, 1,000 people from the fields of public health, social marketing, health communication, health education, and other fields gathered in Atlanta for the CDC’s 2nd Annual National Conference on Health Communication, Marketing, and Media. Miguel Gomez, AIDS.gov Director, and Jennie Anderson, AIDS.gov Communications Director, attended the conference. We also participated in a panel called “Social Networks and Online Resources for Health Professionals” and shared the lessons we’ve learned from this blog.

The conference provided the AIDS.gov team with multiple perspectives on how public health leaders are using health communication and media tools (both old and “new”) to respond to public issues (including HIV/AIDS). The conference covered a wide range of topics, including the culture of poverty, peer-to-peer communications, media coverage, and evaluation and Web metrics.

Miguel Gomez, Director of AID.gov with Jennie Anderson, Director of Communications, AIDS.gov

We were pleased to hear about several HIV/AIDS-focused resources, including:

• Positive Health Project —provides health and prevention services designed for people at highest risk for, or living with, HIV (e.g., substance abusers, sex workers, the homeless)
• STD Prevention Online.org —an online social networking site for HIV providers and sexual health providers from the Internet and STD Center of Excellence
• Student-generated public service announcements on HIV testing—a collaborative project of the CDC and the University of Georgia. Check out our past blog post about this!

Presenters also shared many resources which can help us better understand new media tools. Several of these resources included:

• Mobile Access to Data and Information [PDF]—from The Pew Internet and American Life Project (March 2008)
• Google Trends —provides the average worldwide traffic of a particular search term (e.g. “HIV”) or a comparison of multiple terms (e.g.“HIV” vs “AIDS”)
• The Digital Opportunity: Using New Media For Public Education Campaigns —from the Ad Council and Kaiser Family Foundation (2007)
• Online Health Search 2006 [PDF]—from The Pew Internet and American Life Project (October 2006)
• Osocio —“Social advertising and nonprofit campaigns from around the globe“

We enjoyed meeting (and in some cases reconnecting) with many of our CDC colleagues, along with many others, including Ben Heywood from PatientsLikeMe, Dr. Vish Viswanath from the Harvard School of Public Health , Nedra Weinreich from Weinreich Communications and author of Spare Change , Michael Ruppal from The AIDS Institute , and many others. Many of our relationships in new media are virtual, so it’s always nice to put a face with a name—and replace the ubiquitous :) with a real smile!

Sandra Thurman delivering the closing plenary session

During the closing plenary, Sandra Thurman, President and CEO of International AIDS Trust , talked about the importance of adding “Listen” and “Learn” into the conference’s theme (“Engage and Deliver”). She referenced the recent release of the new CDC HIV incidence data and noted that we could have addressed this earlier if we had listened to and learned from some of the communities hardest hit by the epidemic—men who have sex with men and African Americans. Sandra also stressed the importance of working across disciplines, forming private and public partnership, spending time in the communities we are trying to reach, and most importantly, “keeping a passion for doing what we do.”

Speaking of passion - we’ve received lots of comments on our post about the new HIV incidence data being a “wake-up” call. To all our commentors, thank you! We’re thrilled to have this dialogue - and look forward to hearing more from you in the days and weeks to come.

We also want to thank our CDC colleagues for hosting an informative conference! Check out the CDC’s new Facebook Group “Health Communication, Marketing, and Media ” and The Healthiest Nation Alliance .

International AIDS Conference: New Media and the AIDS Community - Some Good News

Last week, we "twittered" from the International AIDS Conference (IAC) , and we planned to talk about that this week. We were struck, however, by our conversations on new media with IAC delegates and we decided to write about what we learned at the conference instead. (Stay tuned for more on Twitter soon!)

From the plenary on the future of the global pandemic to AIDS.gov's conversations with a cross-section of the 23,000+ IAC delegates in Mexico City, the topic of new media kept popping up. In that plenary session, Dr. Peter Piot , director of UNAIDS (and one of the leading voices in developing HIV/AIDS policy worldwide), acknowledged the importance of new media in meeting the challenge of HIV/AIDS. Dr. Piot explicitly mentioned Facebook and text messaging as important tools in carrying messages about HIV/AIDS--but he was one of the few who did.

“It is time that prevention programs embrace Facebook, texting, all the communication means, the new information technology that young people are using. It is not by billboards that we are going to introduce social change and personal behavior change on a large scale.” Dr. Peter Piot, Executive Director, UNAIDS

At our poster session on AIDS.gov, and in informal interviews throughout the weeklong conference, we asked people from all different sectors (government, community-based and faith-based organizations, the private sector, and academia) if, and how, they are using new media in response to HIV/AIDS. Their responses showed a common theme:

Everyone thinks using new media to offer HIV prevention, testing, and treatment messages is a great idea, but very few have made the leap to integrating new media consistently into their daily work or planning.

AIDS.gov poster session: Miguel Gomez, Director of AIDS.gov, and Dr. Hazel Dean, Deputy Director of the CDC's National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention.

For those who said they were working on new media initiatives, they recognized that work as a priority. Several organizations, including amfAR and GMHC , were planning rollouts or redesigns of their websites in the near future.

The Kaiser Family Foundation (KFF) was the major new media presence at the conference. KFF provided webcasts for all of the major IAC sessions, as well as interviews with many of the most prominent policymakers and activists in the AIDS community.

There were plenty of bloggers at the conference. Community HIV/AIDS Mobilization Project (CHAMP) sponsored AIDS2008.com , an independent community resource for the 2008 IAC, which included blogs from many conference attendees. In addition, a Google blog search yields over 60,000 mentions of the IAC.

Despite these high-profile new media efforts, however, almost everyone we talked to stressed that the use of new media in response to HIV/AIDS is in its infancy. The overwhelming consensus of the delegates was that the AIDS community lags behind in using new media, and that we need to catch up and learn how to use new media tools quickly.

There was a lot of interest in new media from many of those on the front lines. The AIDS.gov team attended a fascinating session titled Reaching Millions--Youth, AIDS, and the Digital Age. The panelists were all young AIDS activists who are using the Internet and cell phones to reach and support young people at risk for, or living with, HIV/AIDS in some of the world’s most affected regions.

All of the interest generated by these sessions, and the enthusiastic response to our interviews, led us to believe that there is a need for a conference on AIDS and New Media. Stay tuned as we attempt to make it happen!