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?

Communities of Color and New Media Use: Part II

As we mentioned in our last post, after attending The United States Conference on AIDS we wanted to get a clearer understanding of internet and new media use among communities of color. To learn more we hosted a webinar, “Underserved Populations and New Media Use,” for over 100 of our Federal colleagues and their grantees (visit our podcast page for the slides and an audio recording of the webinar). Last week, we discussed the presentation by Fard Johnmar, Founder of Envision Solutions, LLC. Our other webinar speaker was Alejandro Garcia-Barbon, Senior Technical Advisor to IQ Solutions, Inc. He presented about the “Drugs + HIV > Learn the Link” Campaign of the National Institute on Drug Abuse (NIDA).

NIDA’s “Drugs + HIV > Learn the Link” Campaign: What is it all about?

The campaign designed their first public service announcement (PSA), “Text Message,” to reach young African American women with information about non-injection drug use and HIV. The PSA’s success led to the creation of a PSA to reach young Hispanic women. The result was “After the Party,” a PSA available in both Spanish and bilingual English-Spanish versions, about a young woman who receives an HIV-positive diagnosis.

The campaign’s website has resources for teens on HIV and drugs along with five webisodes that continue the story of the characters in the PSAs. They use other new media tools, like MySpace , as a means to distribute and promote their messages.

Stephen Perez, a registered nurse who works with the Latino community in San Francisco around HIV/AIDS, told us, “I encourage my clients to reflect on the impact of alcohol and drugs in their lives. This site helps to reinforce these messages. The use of new media tools, like MySpace, to further promote the campaign reaches many young Latinos where they are already spending time.”

How can I use these tools to get ready for National Latino AIDS Awareness Day (NLAAD)?

October 15 is National Latino AIDS Awareness Day . In anticipation of this important day, consider sharing the “Drugs + HIV > Learn the Link” resources with your colleagues and friends. And check out another campaign targeted to Hispanic audiences: the Soy (I am) project, a joint venture between Univision and the Kaiser Family Foundation. Soy tells the stories of individual Latinos living with HIV/AIDS; another example of using new media to start conversations, reduce stigma, and link people to important information and resources.

What are lessons learned for programs wanting to use new media tools to reach underserved communities with HIV/AIDS messages?

1. Tell a story. By making the characters and their actions realistic and relevant to the lives of their target audience (young African American and Hispanic women), the NIDA campaign draws the viewers in and makes them care about the content.
2. Have good content. A good story isn’t enough by itself - the information has to be accurate and link the viewer to the additional resources they need.
3. Be flexible. By using a variety of formats - webisodes, radio and TV PSAs, print and online materials - including some that are effectively accessible without a broadband internet connection - and marketing them in different ways, the campaign responds to the reality of where their audience gets information and how they want to receive it.

With just one week to go, it’s also time to register your NLAAD event or find one to attend. And stay tuned next week for more on using new media to reach the Latino community and the Latino Commission on AIDS!

Catching up with Communities of Color: Online and New Media Use

In our last post on the United States Conference on AIDS , we talked about a number of programs that are using new media to reach minority communities with HIV/AIDS information and resources. At the conference we heard about HIV/AIDS programs trying to be where many of their communities are: online and using new media. But is that where our target audiences really are? We wanted to get a clearer understanding of internet and new media use among communities of color. To learn more, we hosted a webinar, “Underserved Populations and New Media Use”.

We are grateful to our speakers, Fard Johnmar, Founder of Envision Solutions, LLC , and Alejandro Garcia-Barbon, Senior Technical Advisor of IQ Solutions and the National Institute on Drug Abuse’s (NIDA) Drugs + HIV> Learn the Link Campaign (more on this in next week’s post), who shared their knowledge and experiences with us and over 100 of our Federal colleagues and their grantees.

Is there a “digital divide”?

Fard Johnmar, Founder, Envision Solutions

First of all, what do we mean by the digital divide? At AIDS.gov, we’ve been using the following adaptation of Wikipedia’s “digital divide” definition: “the gap between people with, and without, effective access to digital and information technology.” In this definition, access is different than effective access – for example, use of a slow dial-up Internet connection at a public computer is less effective than a high-speed Internet connection at home.

Fard told us there are several things we need to look at when considering who is online. According to the Pew Internet & American Life Project , 73% of all adults in the U.S. are using the Internet or e-mail. There is a gap between White (75%) and Black (59%) users of these technologies, but it has been decreasing over the past several years. Eighty percent of English-speaking Hispanic adults are using both technologies. And 90% of all adults ages 18-29 are using e-mail or the Web. If your target audience is youth, Black, White or Asian many are clearly Internet savvy.

So where do the biggest gaps in Internet use remain? There is a divide between Spanish-dominant Hispanic adults and other population groups, though 32% are online. As Fard showed us, the other important piece of the puzzle is the effective Internet access piece – and looking at access to high-speed Internet connection shows gaps based on income, race and location (rural vs. suburban or urban). Lack of access to high-speed Internet doesn’t mean people aren’t online, Fard cautioned us, but it might mean different populations use different new media tools in different ways.

How are communities of color using new media?

Fard shared statistics from eMarketer that suggest African American and Hispanic adults are more likely to use certain new media technologies than Whites, such as social networking sites, online chat rooms, and instant messaging.

Online Social Networking and Communications Activities of US Internet Users, by Race/Ethnicity, March-April 2007 (% of respondents in each group)

	African American	Hispanic	Non-Hispanic white
Reading and writing e-mail	64%	66%	81%
Instant Messaging	45%	46%	36%
Visiting social networking sites	33%	32%	20%
Sending greeting cards	29%	31%	26%
Participating in chat rooms	22%	22%	10%

Note: n=1,038 African American, 766 Hispanic and 901 non-Hispanic white; ages 16+; activities done frequently or occasionally. Source: Yankelovich, "2007/2008 MONITOR Multicultural Marketing Study," provided to eMarketer, September 17, 2007

A study by Envision Solutions found that 45% of Hispanics and 40% of Blacks as well as 37% of Whites had doubted a medical provider’s opinion or diagnosis because it conflicted with information they had read on the Internet. As Fard said “we know that people of color are not only going online to learn about health topics but they’re being influenced by information provided by what we call Dr. Web.” People are using the information they find online to make important decisions about their health – so we need to be there with good tools and information!

What’s an example of a program using new media to reach communities of color? Stay tuned!!

Alejandro Garcia-Barbon, Senior Technical Advisor, IQ Solutions

Next week we’ll hear from Alejandro Garcia-Barbon, about his experiences implementing NIDA’s “Drugs + HIV> Learn the Link” Campaign. This campaign uses TV, print and online and radio public service announcements, posters, social network sites and other tools to send prevention messages specifically targeted to African American and Hispanic girls.

In the meantime, we’d love to hear about your experiences reaching communities of color and using new media tools to enhance 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!

"A Picture is Worth A Thousand Words"-- How to Increase Involvement in World AIDS Day 2008

“A picture is worth a thousand words” and today we will be talking about two different powerful pictures that relate to World AIDS Day--one which involves data, and the other which involves you.

Picture # 1: The Trend

The picture above shows our search results from typing “AIDS” into Google Trends (a tool that lets you see what words people are searching for on Google). Two key things caught our attention about this picture: 1) People are searching for the word “AIDS” most frequently around World AIDS Day (December 1st), and 2) for the last four years, there has been a steady decline in the number of people searching for this term.

As AIDS continues to take a devastating toll on people around the world and here at home, we must change this trend. We can't afford to be complacent. A few weeks ago, the CDC told us that the number of Americans who are newly infected with HIV each year is even worse than we thought. Because there is no cure for HIV and no vaccine to counter it, HIV prevention and testing remain two of our most powerful tools in the response to the HIV/AIDS epidemic.

So, here's where picture #2 comes in....

Picture # 2: Changing the Trend

As many of you know, World AIDS Day is December 1st. This is a day for us to come together around HIV/AIDS--to remember, recognize, and take control of the future. But given the downward trend illustrated above, the subject of AIDS seems to be falling off peoples' radar.

The good news is that we know more and more people are going online and turning to their peers for health information. This is where YOU --providers, educators, caretakers, social media gurus and novices, colleagues, and friends--come in. We need your help to reduce the stigma around HIV/AIDS and encourage testing for World AIDS Day. In four easy steps, you can help create change.

1. Grab your cell phone or digital camera and take a picture of yourself wearing a red ribbon --any red ribbon--cloth, paper, plastic, licorice, etc.--feel free to be creative!
2. On December 1st--World AIDS Day--add the picture to your social networking profiles, blogs, other websites, etc. Leave the picture up for one week (until December 8th at midnight--no matter where you live).
3. Add your picture to the World AIDS Day 08 Flickr account! Not on Flickr? Flickr is an online photo management and sharing application. Signing up is fast, and allows you to post your picture to the group so we'll have an album of everyone who took action.
4. Tell 10 friends to do the same.

Together we can remind people that HIV/AIDS is still a threat. Together we change the trend.

Between now and World AIDS Day, we'll blog about other exciting new media activities for you to get involved with....stay tuned!!!

Are you planning any new media activities for World AIDS Day? If so, please let us know about them and we can help spread the word.

Also, next week, AIDS.gov will be hosting two different activities at the United States Conference on AIDS (USCA), the nation's largest HIV/AIDS conference. USCA is run by the National Minority AIDS Council --and it gives us an opportunity to meet with leaders in communities of color to talk about new media.

Our events will include:

Open Discussion Group on New Media (Friday, September 19, 6:45-7:45 PM, Room 302, Convention Center) We will discuss what new media is and how you can use it in your work on HIV prevention, testing, and treatment.

Workshop on HIV/AIDS Awareness Days (Saturday, September 20, 9:30-11:30 AM, Floridian A, Third Floor, Convention Center)--HIV/AIDS Awareness Days: A Turning Point Cross Promotion of the National HIV/AIDS Awareness Days: Where Are We Now? Where Can We Go? We will discuss how HIV/AIDS Awareness Days can be used to promote HIV prevention, testing, and treatment.

If you plan to attend USCA, please join us for the dialogue!