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April 2008

April 29, 2008


Going to PodCamp and Learning about Obligations

Photo of Miguel Gomez and Israil Ali at Podcamp DC

Photo courtesy of Russell Heimlich

Miguel Gomez, Director of AIDS.gov and Israil Ali, HHS Emerging Leader, at Podcamp DC

Last week, two members of the AIDS.gov team went to PodCamp Exit Disclaimer in Washington, DC.

PodCamps are usually free unconferences Exit Disclaimer that offer a chance for new media users (such as bloggers, podcasters, and social networkers) to learn from experts and to engage in dialogue with each other. We want to thank the organizers: Christopher Penn Exit Disclaimer, Tammy Munson Exit Disclaimer, Joel Witt Exit Disclaimer, and Ernie Ambrose!

Note: For the basics on podcasting, please see our earlier post.

What did we learn at PodCamp?
Some of the country's leading new media experts like Jim Long Exit Disclaimer and Andy Carvin Exit Disclaimer reinforced messages that we all have the obligation to restate. If you are already podcasting (or thinking about it), we all must keep in mind that:

  • It's about users. Put people first, and give them the information they want, in the form they want it.
  • It's about content. It's easy to get caught up in the technology--but people use the technology to get to the content. You have to offer them useful information.
  • It's social. People like to consume and produce new media, but they also like to share it. They want to connect to other folks and engage in a dialogue.

Connecting with Leadership at PodCamp
At PodCamp, we talked about AIDS.gov's obligation to ensure that our new media efforts help racial and ethnic minority communities increase their access to HIV prevention, care, and treatment services. Thanks to PodCamp, we met and spoke with Shireen Mitchell, the founder and Executive Director of Digital Sisters, Inc. Exit Disclaimer, an organization that focuses on using digital media and technology to access self-sufficiency tools for women and children who are traditionally underserved.

Shireen noted that some leaders may have misconceptions about use of new media among communities of color and how people connect. She says people interact in communities in which they are comfortable--and this means broadening new media efforts to reach people where they are.

"Social networks are not new," she says--noting that "people have always created social groups for pleasure and to exchange information. "It's the tools and technology that have changed." As with real estate, location is everything. "Not all people of color are on MySpace and Facebook," Shireen told us. "You might find us on MiGente Exit Disclaimer and BlackPlanet Exit Disclaimer [social networking sites specifically developed for communities of color]." To be effective, you have to find the right venue, along with relevant content.

Thanks to leaders like Shireen and others, the conversation about new media and communities of color is increasing among new media experts.

Other Federal Representatives at PodCamp
While it's critical to talk about users, we also have to remember that many of our colleagues are still unfamiliar with new media tools, and some are hesitant to use them. At PodCamp, we were pleased to meet representatives from the Department of Commerce, the Army, and Voice of America Exit Disclaimer. We agreed that we have an obligation to do a better job of sharing how important new media tools are with our colleagues and senior managers. We also have to let our peers know about podcasts and other new media tools, and share information on who is using them.

Finally, PodCamp reminded us that we need to provide opportunities for our colleagues to learn about new media. PodCamps Exit Disclaimer are just one of the many (often free) opportunities to learn about new media. Starting in May, this blog will carry a list of new media conferences.

We were introduced to (and reminded of) several resources that we'd like to share with you, as well:

  • Podango Exit Disclaimer that allows podcasters host and manage their own shows or stations using the company's hosting, syndication, audience measurement and Web site creation tools.
  • The new media search engine IceRocket Exit Disclaimer
  • Blogpulse Exit Disclaimer, a service of Nielsen BuzzMetrics, searches content on blogs and identifies trends
  • Wikipedia's list of social networking sites Exit Disclaimer
  • Utterz Exit Disclaimer, that allows you to update your existing web pages on sites like Blogger, WordPress, Facebook, LiveJournal, and MySpace from your mobile phone
  • Mogulus Exit Disclaimer to create your own online tv channel and shows
  • Twitxr Exit Disclaimer to upload photos from your mobile phone (similar to the microblog application, Twitter Exit Disclaimer, but with photos)

Were you at Podcamp in DC? New York? We'd love to hear from you!

April 22, 2008


Doing the Right Thing--508 Compliance

In our post last week, we talked about planning and putting people first before choosing new technology. We highlighted the POST Exit Disclaimer strategy which starts with:

P = People. Who is your target audience? What tools are they using?
We believe in putting people first, and that means our website content must be equally accessible to people with disabilities--some of whom have acquired their disabilities as a result of HIV/AIDS.

Recently, we learned that thousands of our Federal HIV websites are not always accessible to persons with disabilities, including more than one million legally blind, and 28 million deaf or hearing-impaired, citizens. Last week, AIDS.gov sponsored a conference call for over 100 of our Federal colleagues to talk about making our websites "Section 508 compliant." (This refers to a law that requires Federal information in electronic formats to be accessible to all individuals with disabilities.)

During the call, we learned a lot from our Federal colleagues about the things we need to do to ensure our HIV/AIDS web pages are compliant, as well as some key information for those who receive Federal HIV/AIDS funding.

HIV/AIDS Webpages and 508
Jeremy Vanderlan from AIDS.gov talked about his challenge in developing promotional materials. In using a screen reader that allows you to experience "reading" a document just as a visually impaired person would experience it, he noticed that the screen reader read the phrase ".gov" as "dot governor." To resolve the problem, Jeremy edited each ".gov" instance to "dot gov." "As you can imagine, if these are promotional documents for a dot gov website," Jeremy said, "there were quite a few references to this error."

Michael LaFlam commented after the call about the CDC's video podcast accessibility issues. "We had thought that, because we offered a transcript, we were meeting requirement standards," he said--something those of us at AIDS.gov also had to learn. "We subsequently learned that we needed to make our podcasts open-captioned, which is different from closed-captioned, in that the text appears on the screen without user intervention." The CDC has to outsource the open-captioning process, which affects their production time-line and budget.

Kristen Kayatta, one of HHS's Section 508 experts, told those on the call that there are numerous 508 issues on HHS's 1.6 million Web pages. In fact, there's an average of 14 issues per Web page. That's a big job to fix, but Kristen said, "We have a five year plan ... we're well on our way." She explained 508 compliance to our Federal colleagues in this way:

" ... at the most basic level, [508 compliance] requires and ensures that all users have equal access to electronic documents. First, is the development of web pages. This means that all files must be machine-readable. All audio files need to have accompanying text and video files need to be captioned. Secondly, Section 508 applies to all electronic documents, including PDF files, Word files, and the PowerPoint files. And, lastly, this affects not only files that are posted on our site, but also those that are shared through e-mail, through portals, and that are saved on our share drives."

Kristen offered some resources to help everyone achieve 508 compliance:

  • HHS Section 508 Accessibility – This site includes information on Section 508, including: determining how the law applies, assistance in creating compliant documents and Web pages, information on standards and policies, how to gain access to 508 tools, and language to add to contracts to ensure all deliverables are 508 compliant.
  • We also recommend that you check out the resources discussed in our January 29, 2008 post on 508 compliance.
  • The U.S. Access Board's standards for Web-based Internet and intranet information and applications (36 CFR 1194.22) for documents (HTML, Word, etc.)--and don't forget the Access Board's standards for software, such as scripting or Flash.

Note to AIDS Service Providers
We all need to think about 508 issues for our Web pages, because, sooner or later, if you work with Federal programs, you are going to face this challenge. Federal agencies are required by law to be 508 compliant, and if you receive Federal funds for your work, you are required to consider accessibility, too. Federal contracts now require products to be 508 compliant, and soon, Federal grant proposals will also contain 508 requirements. In addition, state and local government activities are covered by other state laws and the Americans with Disabilities Act.

Bottom line? We need to be accessible, but we still have a lot to learn. HHS is working to ensure that our materials are accessible, but becoming accessible will be a process, not an event. The AIDS.gov team would like to thank the speakers and participants from last Tuesday's call. Together we can meet our goal of doing the right thing in making all our materials accessible.

Do you have a section 508 challenge or success story? We'd love to hear about it!

You may download the transcript of the conference call in PDF (89.9K) or Microsoft Word (62.5K) format.

April 15, 2008


People Before Technology

At AIDS.gov, we've learned that new media is exciting and many of us want to incorporate these tools into our programs before we have a plan. To prevent this from happening, our AIDS.gov New Media Strategist has urged us and others to use Forrester Research's POST strategy Exit Disclaimer to stay on track.

POST Strategy--The order is important!

  • P = People. Who is your target audience? What tools are they using?
  • O = Objectives. Pick one. Are you starting an application to listen to your customers, or to talk with them? To support them, or to energize your best customers to evangelize others? Or are you trying to collaborate with them?
  • S = Strategy. What do you want to accomplish? Do you want increase testing rates? Increase awareness?
  • T = Technology. This might be a podcast, wiki, social networking site, or a blog Exit Disclaimer. Once you've defined your people/audiences, your objectives, and strategy, then you can choose the most appropriate technology.

New Media Planning and AIDS Service Organizations
To get a better idea of how we can all use the POST strategy to promote HIV information and services, we talked again with Erik Ireland from the San Francisco AIDS Foundation (SFAF) Exit Disclaimer, and Mark Clark, of New Mexico AIDS Services (NMAS) Exit Disclaimer, about how the strategy guides their new media work.

Along with SFAF clients and people at-risk for HIV, Erik says that Foundation staff have identified their colleagues and peers as one of their target audiences. At NMAS, Mark and his colleagues have identified two main audiences for their new media work: 1) People living with HIV/AIDS (PLWHA), many of whom have dual diagnoses (i.e., HIV with substance abuse or mental health issues); and 2) People at risk for HIV (late-testers).

Mark says "We know folks are going online. Many of them are in rural areas and they rely on the Internet to communicate with other people and find services. Our clients see the Internet as a safe and private way to get information."

Because SFAF has identified professional peers and colleagues as one of their target audiences, Erik says one of their objectives is to "stay in touch with [them] and keep them abreast of important HIV information."

Mark says that NMAS' objectives include linking PLWHA with services (e.g., health education classes) and encouraging people to get an HIV test. "We also want to encourage clients to talk with their providers about who and what they are all about," he says.

"Our strategy is to provide people with the most timely and easily-digestible information," Erik says. "We want to give them a short synopsis so they can dig deeper if they are interested."

Mark says that NMAS has a similar strategy. "We try to bring the information to our target audience, and give them the newest information in the timeliest way possible. We want to offer information that grabs their attention." To do that, Mark says, "We involve folks where they are (the Internet), 24-7."

Erik says that SFAF uses podcasts Exit Disclaimer because "they are a 'short and sweet' way to bring HIV information to our audience. People can listen to them when and where they want to."

During SFAF's planning process, everyone agreed podcasts would be the most appropriate new media tool. "We've gotten great feedback from our listeners...And now people are coming to us with content ideas!" Erik tells us.

Mark and NMAS use the NMAS MySpace page Exit Disclaimer as a way to reach their target audience where they are: "It's an immediate way to get the word out, and it's convenient."

It is important to note that the best technology choice may be the simplest. For example, e-mail or text messaging may be the best way to reach a specific audience. Avoid the temptation to choose the technology first and be lured by the "cool" factor.

Avoid the temptation to choose the technology first and be lured by the "cool" factor.

Bottom-line: There are many new media-planning strategies out there, including POST. No matter what strategy you use, it should always be about your target audience--what they need and want.

Please let us know what you think of today's post!

April 09, 2008


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 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 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!

April 01, 2008


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:

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.Exit Disclaimer

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