Sustaining HIV Vaccine Communications and Outreach: A NHVREI Partner Toolkit As leaders and advocates in the HIV/AIDS community, your organizations will remain vital to the continued support of HIV vaccine and prevention research. You are well aware of the great strides scientists and researchers are making in labs around the world. Those efforts would not be possible without the dedication of individuals like you, whose credible voices will continue to inform and educate communities even after NHVREI. Whether through presentations, events, op-eds, or tweets, your trusted voices are critical to ensuring that accurate, timely, and culturally appropriate information reaches key communities and constituents, particularly key influencers and those most impacted by the epidemic. This toolkit was designed to provide you with a variety of resources and samples to assist you in your communications and outreach activities. We hope you will refer to this toolkit as you continue to engage your constituents, communities, and collaborators in a meaningful dialogue about HIV vaccine research. We thank you again for your commitment to these efforts and look forward to following you—in print, online, through the airwaves, or on mobile devices—in the years to come. Contents Navigating Communications ......................................................................................................................... 3 How to Talk to the Media ........................................................................................................................... 11 Sustaining Your Vaccine Messages in the Media ........................................................................................ 14 Social Media Tips ........................................................................................................................................ 15 Facebook. ............................................................................................................................................... 16 Twitter .................................................................................................................................................... 19 Blogging. ................................................................................................................................................. 23 Integration. ............................................................................................................................................ 27 Observance Day Blurbs ............................................................................................................................... 29 Calendar of HIV/AIDS Observance Days and Meetings .............................................................................. 30 NHVREI Key Message Platform ................................................................................................................... 33 Credible Sources in HIV Prevention Research ............................................................................................ 34 Credible Sources in HIV Prevention Funding .............................................................................................. 38 Community Engagement in HIV Vaccine Research ..................................................................................... 40 Sample HIV Vaccine Research Education Presentation .............................................................................. 41 HIV Vaccine Quiz ......................................................................................................................................... 53 Additional Resources and Materials ........................................................................................................... 54 Ongoing Trials of Preventive HIV/AIDS Vaccines Worldwide ................................................................ 55 CDC Interim Guidelines on PrEP............................................................................................................. 57 Advocate’s Guide to Statistical Terms ................................................................................................... 59 PX Wire................................................................................................................................................... 60 Grant Sources and Writing Tips .................................................................................................................. 65 2 Navigating Communications: A Communications Glossary for NHVREI Partners 3 General Communications Terms Message development – Aligning the mission, vision, and goals of your organization into clear, concise messages that effectively convey your program/organization. These messages can be used to develop a variety of communications materials, including fact sheets, talking points, and op-eds. Key influencers– Trusted leaders and organizations that can influence the thoughts or actions of individuals and communities. Key influencers can include potential funders, HIV/AIDS service organizations, local and regional philanthropy groups, educational institutions, local businesses, community and civic organizations, minority advocacy groups, human rights organizations and affinity groups. Stakeholders or third party organization– A person or entity with an interest in an organization’s success in delivering its products, services, or messages. For example, achieving increased public awareness and knowledge about HIV vaccine research in the case of NHVREI. Strategic communications plan - A strategic communications plan is a written statement that provides direction for all communications activities. The plan should include the goal, objectives, and target audience, understanding of the needs and perceptions of the target population, action steps that should be taken, reasons why your target audiences should be compelled to act, and the benefits to be gained. The plan provides the direction and consistency for all messages and materials that follow. It often calls for the implementation of tactics such as research, message concepts, materials creation, traditional media (e.g., TV, newspapers, radio), new media (see Web 2.0) stakeholder outreach, and evaluation and tracking. 4 Media Outreach Terms Audio News Release (ANR) – A scripted audio recording that is used to promote a product, organization, idea or event on local and national radio stations. ANRs can range in length but are typically recorded in 30, 60 and 90 second intervals. Backgrounder – An important strategic communications document that concisely explains how an organization was developed and the intended goals and outcomes of the group. This piece is typically one page in length and can be distributed to the media, organizational members, interested parties and/or potential funders. Boilerplate language – A brief statement of purpose that can easily and repeatedly be inserted onto organizational resources and press materials, such as a brochure or press release. Typical boilerplates include mission statements, safety warnings, copyright statements and responsibility disclaimers. Columnist – A writer or editor of a regular feature for publication. Columnists generally produce editorial content for magazines, newspapers and/or blogs and may write pieces on a daily, weekly, or monthly basis. They tend to have a distinct “voice” and often express their opinions. Deskside briefing – A meeting between journalist(s) and organizational leaders to pitch a story or idea and access credible spokespersons. Briefings occur in close proximity to a reporter/editor’s office, offering convenience for publication staff – especially in light of media budget cuts. The goal of these meetings is to get journalists to consider an organization or key spokespersons as “go-to” sources on a special topic area or issue. Earned media – Publication of a story or article that was placed as a result of proactive pitching. Fact sheet – A resource itemizing information pertinent to an organization, issue or cause. Letter to the Editor (LTE) – A timely letter written on behalf of an individual or organization in response to a recently published story or article. Letters are drafted to support or refute a position taken by a reporter or contributor and should include examples or current events to support the presented claim. Check with individual publications for submission guidelines regarding word count. Letters should be submitted either the same day or the day after an article has been published. Media – A channel of communication easily available for public consumption and influence. Media is categorized by a variety of outlets, including radio, television, newspaper, magazine, trade publications, journals and internet news sources. Media can be vital in establishing awareness of a certain topic. Media advisory – A brief announcement that describes an upcoming event or activity. This document should be short, easy to read and feature key points of interest, including the who, what, when, where, why, how and contact information for media inquiries. 5 Media list – An inventory of reporters, writers, editors, and producers to contact when pitching stories and events. This list should be updated frequently and include vital information about the journalist and outlet that is being pitched. Typical media lists include: Publication Contact Name Beat/topic area (contact’s focus –i.e. health, science, community, news, etc) Phone number Email address Location (city, state) Pitching instructions (likes to be contacted only by phone, etc) Media monitoring – Scanning media to determine how a topic has been covered (or not), and which issues and topics are popular in particular news media. Media monitoring is an important way to stay informed of media coverage trends as well as which organizations or key spokespersons have been quoted by journalists on your particular area of interest. This can be especially helpful in informing which publications and contacts your organization should pitch. Media pitch – A call or email to reporters/editors providing them a story idea, news angle or potential spokesperson for publication. Pitch calls are usually conducted following a brief email that includes key messages and information and should be placed between 10 am and 2 pm – the best window of availability for journalists. Media relations – The process of developing relationships with media. Through the consumption of media, large key audiences can become better informed about issues and ultimately help support an organization/focus and influence behavior and action. Media tracking – A method of recoding media coverage of a story or event once it has been released and pitched. Media tracking helps organizations evaluate whether their outreach campaigns have been successful. Tracking coverage allows organizations to analyze media response and understand best methods for future outreach. Media training – A workshop or program designed to prepare individuals representing organizations for media interviews. Training should provide those being interviewed with the necessary tools to stay on message and answer tough questions. Opinion editorial (Op-ed) – An article submitted to the media that expresses the opinion of an individual or organization in response to a current event or issue. Each news outlet has a preferred method of receiving op-eds, so be sure to check their guidelines prior to submitting. Many leaders in the HIV/AIDS community have been successful in leveraging observance days and news on prevention research in their op-ed submissions. Paid media – The acquisition of media space via purchase. For instance, radio media tours, satellite media tours, advertisements (newspaper, magazine, transit ad, billboard, etc.) and matte releases are all paid media tactics. A variety of local and regional vendors supply these services and can work with organizations to craft appropriate strategies. 6 Press kit - A prepackaged folder of materials (media tools) used to provide background information and inform the media about an organization and its key programs and initiatives. Press kits are often distributed at an event, announcement, or during a deskside briefing. Press kits can contain the following items: • News releases • Media advisories • Feature stories • Photographs • PowerPoint slides • Backgrounders • Biographies • Fact sheets • Position papers Press release – A public announcement issued to the media that summarizes an organization’s event, data findings, collaboration, development or new project. Some organizations tailor their press releases to fit individual publications and/or intended audiences. However, it is also acceptable to send a general release that would appeal to a mass audience. Releases should be one to two pages typed, doublespaced and include the contact information of someone who can manage media inquiries. Boilerplate language can also be included at the bottom of a release. Reporter/beat reporter – A journalist who generates content for media publications. Reporters who write to a particular topic or issue area, such as health, local news and science, are known as beat reporters. Talking points – A set of concise statements that help organizational spokespersons or other leadership prepare for an interview with a journalist, for a presentation, or anytime when key messages may be conveyed. These statements should cover the issues most likely to arise during the interview. Wire service – A news distribution service that provides syndicated content to various other media outlets. Wire services include the Associated Press, United Press International, Reuters and Dow Jones. 7 Digital Media Terms Blog – A web-based log that allows individuals to publicly share items of interest. They can have a neutral tone or provide commentary on recent news. Blogs can be created in an open or closed platform, allowing the author to control who is able to view information. Blogs also often allow for comments from readers, engendering a conversation among a variety of individuals. Discussion forum – A website that allows users to discuss topics and ideas with several users, similar to a message board. Discussion forums can be private or public, allowing users to view a conversation and engage in it if they wish. Embed – The act of inserting a multimedia file into a Web page. Examples include RSS feeds, graphics, sounds, hyperlinks, video and social networks. Facebook – A social networking site that allows users to connect and engage with other users through profile, fan and event pages. Participants manage a profile page to publicize interests and work/study information and have the option to update their profile with comments, shared links, posts and “likes.” Facebook fan pages allow organizations to promote information and events and keep supporters/constituents engaged in their activities. Foursquare – foursquare is a location mapping and social networking service for mobile phones that allows users to let their friends know where they are by checking in to different venues. This is great for businesses/organizations as it helps them track consumers’ whereabouts as well as the things they are saying about each venue. Geolocation/Geotagging – A computer or mobile device application that allows individuals to broadcast their physical location. The social networking program foursquare uses geolocation to track users as they change destinations and meet up with friends around their community. Geotagging devices are a great way to share where an activity is being held and to let attendees with these applications broadcast their participation. They can also be used at large conventions and meetings to remind attendees the exact location of a booth, panel, lecture, etc- especially if these are not made available beforehand. Listserv/ email list – A small program that automatically sends an email message to multiple individuals and organizations. Email lists can either be created from scratch (through personal contacts and research) or through an open subscription that allows users to sign up to receive emails. Plugin (or plug-in)– A set of software components that adds specific capabilities to a larger software application. If supported, plug-ins allow for the customization of the functionality of an application. For example, plug-ins are commonly used in web browsers to play video, scan for viruses, and display new file types. Well-known plug-in examples include Adobe Flash Player and QuickTime. 8 Podcast – A channel through which digital audio and video files can be broadcast over the internet and downloaded to a mobile device or personal computer. Podcasts can be standalone files or part of a series; subscribers often learn of new podcast through an RSS feed. RSS (Really Simple Syndication) – A web-feed format that is used to publish real-time information to subscribers. RSS feeds stream information from one website to another, including news, music, video, events. All modern Web browsers include the ability to access RSS feeds. Search Engine Optimization -- The process of improving the visibility of a website or a web page in search engines via the natural or un-paid (algorithmic) search results. Other forms of search engine marketing (SEM) target paid listings. Social media – Media (often online or accessed via mobile device) that allow and encourage communication through easily-accessible web-based publishing technologies. Social media have turned what were once one-way communication vehicles into dynamic platforms for dialogue. Social media can take many different forms, including Internet forums, blogs, and social blogs among others. Social media release – A press release that includes a variety of multi-media tools, such as links to videos, embeddable visuals and audio clips and applications, allowing the information to be shared via Twitter, Facebook and other social media. Social network – In computing, a web-based platform that connects individuals, groups, organizations and/or communities with one another through a variety of shared interests, ideas and knowledge. Most social networking sites allow privacy settings to limit the amount of information that is shared with other users. Social networks include Facebook, Twitter, Myspace, LinkedIn and foursquare among others. Twitter – A micro blogging network that allows users to post and read text called “tweets” that are no more than 140 characters in length. Users can “follow” and “be followed” by other users, allowing them to repost another author’s tweet and share personal tweets with individuals and organizations in their social network. @reply – A Twitter reply or update in response to someone else’s tweet. Handle The Twitter username. The accompanying URL to a Twitter handle is http://twitter.com/username. For example, AIDS.gov’s handle is http://twitter.com/aidsgov. Hashtags (#) – A symbol used to mark keywords or topics in a tweet. Clicking on a hashtagged word in a tweet will reveal all other tweets in that category. Web 2.0 – The current landscape for internet technology and usability which allows users to interface and exchange information over a virtual community. Examples include social networking sites like Facebook, blogs like the Huffington Post, wikis like Wikipedia, video sharing sites like YouTube, hosted services and web applications. Widget – A widget is a stand-alone application that can be embedded into sites allowing users to link personal content to dynamic web apps that can be shared on websites where the code can be installed. 9 Widgets include interfacing applications like icons, pull down menus, buttons, selection boxes and interactive forms. Wiki – A public website that allows multiple users to create and modify content in order to define a particular subject or topic area. 10 How to Talk to the Media: A Resource Guide for Speaking Effectively with the Media 11 General Tips to Remember For your audience and community, HIV vaccine research can be confusing, diffuse, or sometimes boring. Help them see how the work of scientists and researchers could impact people’s lives and make a difference in their communities. Make it known to the public that there is a difference between HIV and AIDS, so do not use the terms interchangeably. Break down the information to as basic a level as possible. (Most newspapers write for people who can read somewhere around the 8th grade but for some the target is 5th grade). Make the message simple but not too oversimplified. Provide comparisons, especially if the issue is rather complicated. Assume you are speaking directly to your audience, not the interviewer (this will reduce the need for “translation” on the reporter’s part, and reduce the possibility of error). Avoid medical jargon including abbreviations and acronyms (with an exception to saying HIV and AIDS as they are part of common vernacular). Do not be overly wordy. Paint pictures with your words. Statistics, numbers and/or trends can help ground your facts, but compelling stories (especially those in the community) are even more helpful at getting people’s attention. If you inadvertently misstate a fact or offer incorrect information, do correct it as quickly as possible. Never fake an answer. If you don’t know the answer to something, be honest about it but offer to get back to the reporter as quickly as possible with the correct information. When you are interfacing with the media it is important to understand that nothing is “off the record.” Make the most compelling points first and then back them up with proof, background information and/or additional detail. Avoid speaking about how someone contracted HIV and instead discuss how the disease affects them, their community, their work and their family. You know your community best, and you know what messages it most needs to hear. Use the messages and ideas in this toolkit to tailor your plans to meet your community’s needs. 12 Interviewing Tips Pre-Interview: Understand your message and anticipate tough questions. Prepare a few key talking points you want to get across during your interview. Role-play before the interview if possible. For Broadcast Interviews: Dress in something comfortable yet confident. Avoid clunky, shiny or noisy jewelry or busy fabrics; this causes distraction. Repeat the question in your answer to capture the topic. If on camera, be aware of your body language During Media Interviews: Broadcast Interviews: Speak slowly, concisely and clearly. Interact with the interviewer and avoid speaking to the camera. Look the interviewer in the eyes; don't let your eyes drift to the camera, the ground or the ceiling. Avoid moving around; being too fidgety or, conversely, being a statue. Know that the cameras (and microphones) are always on. Be personable and don’t forget to smile. Radio/Podcast Interviews: Use your voice to create variety and interest; don’t be monotone. Use inflection. Use notes of key points, facts, etc. Don't let angry or hostile callers fluster you. Avoid “ums” or “ahs.” Don’t use a cell phone or speaker phone; this will cause distorted sound or potential failed phone reception. Print Interviews: It is common for a reporter to tape-record the interview for accuracy. Be prepared to have your exact phrase transcribed. Have prepared notes with you during your interview; It is perfectly acceptable to keep notes or other documents at your fingertips. Most quotes used in print news stories are no more than three sentences, so be prepared to have some of your quotes paraphrased and cut down for space. Offer to help fact check any quotes or details after the interview. After the Interview: Immediately thank the reporter/producer for the opportunity. Be sure to get contact information; as well as provide your contact information once again. Follow-up promptly with any additional requested information. It is appropriate to ask when a story may be published/broadcasted and you may request a copy. Once the story is published/broadcasted, call and thank interviewer for his/her accuracy and be prepared to offer clarification if necessary. 13 Sustaining Your Vaccine Messages in the Media: Keeping Current in the Conversation Follow the News—and Comment: Biomedical prevention research will certainly continue in earnest in the coming years, and as you have become well versed on the topic, your communities are likely to turn to you for interpretation of the news. Therefore, it will be important for you to stay on top of research as it happens and use announcements as opportunities to engage your constituents. You can do so by: Setting up Google news alerts to let you know when prevention research is in the news. Commenting on prevention research news (using the NHVREI platform) on your blogs, on Twitter, and on Facebook. Adding to the conversation in local newspapers by writing letters to the editor or op-eds about recent news (see our tip sheets on writing these). Capitalize on Observance Days: Throughout the course of our work together, NHVREI staff have produced a variety of media products— from drop-in articles to matte releases to blog posts—all of which include messages about HIV vaccine research. Whether you mark these days with events, blog entries or Twitter posts, consider using information about the importance of HIV vaccine research. Make Use of Presentations and Events: Your organizations will undoubtedly be talking about HIV/AIDS at community events and during presentations. We hope you will use these opportunities to continue to educate individuals about the importance of HIV vaccine research Stay in Touch with Your Local HVTU and the HVTN: Even after your NHVREI contract is completed, your local HVTU and the HVTN will continue their media outreach efforts, some of it in your area. When pitching stories to the media, it is often helpful to provide them with local experts, and your voices could be very important to reporters seeking a community perspective on HIV and prevention research. They can also provide you with useful information and data, should you require assistance. 14 Social Media Tips: ‘Follow’ By Example and Stay On Top of Social Networking Trends 15 NHVREI Social Media Spotlight: Successfully Using Facebook to Promote Your Organization and Messages Partner: Gay City Health Project (Seattle, Washington) Website: http://www.gaycity.org/ Facebook page: www.facebook.com/gaycity 1. Choose the Most Appropriate Facebook Platform Facebook features a variety of platforms. It’s important to select the one that best suits your organization’s needs. a. Page: Pages are intended for long-term relationships between organizations and Facebook users, and are therefore your ideal platform. Administrators can view statistics on visitors, and your page will be viewable even without logging in to Facebook (unlike groups). Also, you can create a “clean” URL for a page, like Gay City Health Project has done.(www.facebook.com/gaycity). b. Cause: In addition to your page (or group), you could consider creating a Cause page. Cause is a Facebook application that allows you to conduct fundraising activities. For more information, visit http://www.facebook.com/causes?v=info. c. Group: This is not the ideal Facebook platform for organizations to attract and communicate with followers. A group is designed for individuals who wish to connect on a certain topic, not organizations looking to build long-term relationships. For example, John Doe might create a group about HIV vaccine research to show support for volunteers. Because Facebook designed Groups for personal use, the platform is not ideal for organizational use. However, if you have a well-established group with many members, keep it. d. Profile: A profile is intended for use by an individual. This is not the ideal Facebook platform for organizations; they are intended for personal use by individuals. Please note: It is best to have only one profile, group or page; you should consider deleting any extras. For example, if you have a group and a page, you should delete whichever one has fewer followers. Having more than one could confuse your audience and make it difficult for you to communicate with them. To increase your Facebook presence, add a “Cause” to your offerings. 2. Be Descriptive Most Facebook users are unfamiliar with your organization, but many will be interested in your cause and are therefore good candidates to join your group or “like” your page. Using just an acronym could make it difficult for them to find you. a. If your organization uses an acronym, your Facebook title should include its full name, followed by the acronym in parentheses. b. Use the opportunity to briefly describe your organization and its goals on the Info tab for groups or the box below your picture for pages. A newcomer to Gay City Health Project’s page can understand the general organization after reading: 16 “A multicultural gay men's health organization and the leading provider of HIV testing in King County. We promote gay/bi/trans men's health and prevent HIV transmission by building community, fostering communication & nurturing self-esteem.” 3. Be Active Give users reasons to visit your page frequently so they can learn more and you can promote your message as often as possible. Gay City Health Project does a great job of frequently posting to its Facebook page. a. Posting news articles and linking to websites that align with your organization’s purpose along with new materials are just two ways to stay active. b. Refresh often! If possible, try posting something at least once a day. c. Maintain quality control. Your content is what will keep visitors coming back, so it’s important that it’s both informative and relevant. Make sure to remove old information (particularly regarding events) and any inappropriate posts or spam. 4. Build Relationships a. When fans or friends post on your site, it’s important to acknowledge their contributions by responding. Take a few minutes each day to respond to as many posts as you can and thank them. This will encourage a dialogue. b. Try to build relationships with groups that have similar missions. That will allow you to share content and followers, expanding your reach. i. Spend some time searching for organizations on Facebook with a similar mission. ii. When you find an appropriate organization, you can “like” the page or join the group. You might even want to send a message or post expressing your interest for collaboration and requesting the organization “likes” your page or joins your group in return. Remember, these do not have to be formal organizations; they can simply be groups of individuals who are committed to the fight against HIV/AIDS. iii. Regularly check these appropriate pages/groups to see if they have posted any relevant content that you can post on your own page. This will make it easier for you to keep your content fresh with minimal time and effort. iv. Join the dialogue. If you have any content you think is relevant for other organizations’ Facebook pages/groups (like other NHVREI partners), you can post it to their wall. This will build your relationships with other groups and help you recruit new membership to your own page/group. 5. Leverage Your Website Linking from your site can greatly increase your Facebook following. NHVREI Partners who do not link to their Facebook pages from their websites have an average of 206 members/fans; Partners who do link their Facebook pages have an average of 3,093 members/fans (15 times the membership of non-linked pages). Linking is helpful when trying to spread the word about your social media presence. All social media outlets should be linked from your website, either on the homepage or in the header or footer so the links are on each page. Make sure you hyperlink right to your group or page, not just to www.facebook.com. 17 a. Gay City Health Project has a Facebook plugin on their homepage, so a visitor can “Like” their Facebook page right from the website. If your website does not support the plugin, you can insert a button that links to your Facebook page, or even just add hyperlinked text. Useful Links (click on a title to view the resource): AIDS.gov eHow – How to make a page on Facebook for your business, product, band or organization Facebook – Create your own page for your business, organization, team or personal page Facebook – Causes Useful Links for Website Managers (click on a title to view the resource): eHow – How to put a link to Facebook on my web page NHVREI Partners’ Facebook Pages (click on a Partner name to visit the page): AIDS Alliance for Children, Youth & Families (national) National AIDS Education & Services for Minorities (national) National Alliance of State & Territorial AIDS Directors (national) National Minority AIDS Council (national) SisterLove (Atlanta, Ga.) AIDS Alabama, Inc. (Birmingham, Ala.) Multicultural AIDS Coalition, Inc. (Boston, Mass.) AIDS Foundation of Chicago (Chicago, Ill.) AIDS Project Los Angeles (Los Angeles, Calif.) Planned Parenthood of Middle and East Tennessee (Nashville, Tenn.) Gay Men of African Descent (New York, NY) The SafeGuards Project/Circle of Care Family Planning Council (Philadelphia, Penn.) MOCHA Center (Rochester, NY) San Francisco AIDS Foundation (San Francisco, Calif.) Entre Hermanos (Seattle, Wash.) Gay City Health Project (Seattle, Wash.) 18 The DC Center (Washington, DC) NHVREI Social Media Spotlight: Successfully Using Twitter to Promote Your Organization and Message Partner: National Minority AIDS Council (NMAC) – Washington, DC Website: http://www.nmac.org/ Twitter page: http://twitter.com/NMACCommunity Why Tweet? NMAC says… …it drives people to the site, and the site drives people to Twitter. It’s also a way to bring those who don’t necessarily know much about HIV/AIDS in the door to help them to learn more. Internal news: NMAC's MILES training is coming to New York on Feb. 8-9th. Applications are due January 21st. More info: http://blog.nmac.org/?p=434 External news: TIME Magazine says HIV Pre-Exposure Prophylaxis, or PrEP, is top medical breakthrough of 2010: http://ow.ly/3xu6p Trials Begin On Potential Vaccine to Prevent Mother-To-Child Transmission Of HIV After Birth http://ow.ly/3lfxk 8:20 AM Dec 10th, 2010 News: Temple University Targets Community Viral Load to Reduce HIV. Read more at: http://ow.ly/3aMyX Post-doctoral research fellowships for HIV Prevention in Communities of Color; applications due Dec. 31, 2010: http://ow.ly/2XfWP 1. Twitter Glossary and Links a. Follower: A follower is another Twitter user who has followed you. Find out more about following, or learn how to follow others. b. Following: Your following number reflects the quantity of other Twitter users you have chosen to follow on the site. Find out more about following. c. Handle: A user's "Twitter handle" is the username they have selected and the accompanying URL, like so: http://twitter.com/username d. Hashtag: The # symbol is used to mark keywords or topics in a Tweet as part of a category. Was created organically by Twitter users. Read more about hashtags. e. Mention: Any Twitter update that contains @username in the body of the tweet. These are collected for each user and listed in their account. f. Reply: A Tweet posted in reply to another user's message, usually posted by clicking the "reply" button next to their Tweet in your timeline. Always begins with @username. Read more about replies and mentions. g. Retweet: Noun: A Tweet by another user, forwarded to you by someone you follow. Often used to spread news or share valuable findings on Twitter. Verb: To retweet, retweeting, 19 retweeted. The act of forwarding another user's Tweet to all of your followers. Find out more about retweets. Learn why you can't retweet certain tweets. h. Tweet: Noun: A message posted via Twitter containing 140 characters or fewer. Verb: Tweet, Tweeting, Tweeted. The act of posting a message, often called a "Tweet", on Twitter. Find out how to post a Tweet. 2. Setting up Your Account a. Choose your handle. Twitter restricts handles, or usernames, to 20 characters, but for retweeting purposes, the shorter the better. Try to shorten your organization name without losing its brand, so take advantage of an acronym if you use one. b. Set up your page. Since your handle will likely be an acronym or otherwise abbreviated version of your name, you should be sure to include your full name, location, website, logo and a brief description of your mission. NMAC provides enough information on their page that anyone can understand their organizational function. c. Design your page. You can customize your page’s background – giving you the opportunity to incorporate your brand image to your Twitter page. However, make sure your design is not overwhelming (e.g., wallpapering the background with tiles of your logo) – the majority of the background should be a solid color. NMAC incorporates their brand in a simple and manageable – yet impactful – way. d. Spread the word. You should have a prominent link to your Twitter page on your website, Facebook and other communications tools. Include your Twitter URL in any newsletters or emails you send to your audience. 3. Relationship Building In order to leverage Twitter to further your organization’s reach, you must have “followers.” In order to fully engage on Twitter, you must not only disseminate information, but also become a listener yourself. a. Find organizations with similar missions, and follow them. Hopefully they’ll reciprocate by following you. b. For particularly relevant organizations, you may want to follow as many of their followers as possible. Again, the hope is that they’ll reciprocate. c. Try to respond to all replies to your tweets to let your follower know you’ve received their message. 4. Content Note: Before you begin building a following, you should post a few Tweets. This way, people will be able to see what type of information you’ll Tweet about. a. Twitter content must be regularly updated. Here is a list of potential tweet content: i. An upcoming event like HVAD ii. A new achievement in the treatment of HIV iii. Any new media attention iv. Relevant news/data v. Pose a relevant and timely question to your followers 20 b. Take advantage of other organizations’ information: i. It’s a good idea to set up Google News Alerts for key words/phrases that are relevant to your organization so you’ll be the first to know about appropriate news. Examples: “HIV OR AIDS funding” or “HIV OR AIDS treatment.” ii. Make a list of pertinent organizational sites – especially for organizations that create new data – which you can check out daily/every few days for new content. Examples: AIDS.gov or CDC.gov/HIV. 5. Composing Tweets Tweets are limited to 140 characters, so are intended to be extremely brief. Here are some tips on composing tweets: a. Single topic. If you have multiple items you want to address, put each in its own tweet. It’s okay if you tweet them within a few minutes of each other! b. Leverage your relationships. i. Retweet. If you see a tweet by someone you follow that is relevant and you particularly like, Retweet it! This strengthens your relationship with that person/organization, and relieves you of the need to come up with new content. ii. Use mentions. Any time you refer to another organization in a tweet, use a “mention” so they’re notified that you’ve mentioned them. For example, when citing new AIDS.gov content, instead of typing “AIDS.gov,” use “@AIDSgov.” This helps to build your relationship with organizations whose content you use, and is considered a Twitter courtesy. c. Use hashtags. Hashtags (#) are a way to categorize tweets. When you type “#HIV” or “#AIDS” in your tweet and you have a public account, anyone who does a search for HIV or AIDS may find your tweet. Although any keyword with a “#” in front could be considered a hashtag, there are many commonly used hashtags (you can find popular hashtags at hashtag.org). d. Shorten URLs. Links – especially for news articles – are often very lengthy. In order to save enough space for the actual content of your tweet, you can utilize a URL shortener (e.g., bit.ly and ow.ly). These services are free, simple to use and also provide link analytics. If you create a free account, you get custom links, so you’ll know how many people clicked on the link you posted. 6. Making it Manageable Because Twitter content is ideally updated at least once daily, it can seem like an overwhelming endeavor. However, there are programs to help you manage your Twitter activity. NMAC uses HootSuite, an application that not only updates their Twitter and Facebook pages simultaneously, but allows them to set it all up in advance. They spend an hour teeing up tweets for the next several weeks, and HootSuite automatically posts them at indicated intervals. If breaking news hits, then they tweet manually. 21 7. Tracking Your Progress No matter how actively an organization works to become a Twitter influencer, the process can take months, if not longer. Your followers will likely grow at a slow pace, so do not be discouraged! However, it’s always a good idea to evaluate your outreach efforts. Here are some ways you can track your progress over time. You might want to take a few minutes at the end of the month to track the following: a. Number of followers. Understandably, this number indicates how many people each tweet potentially reaches. b. Your following. This number demonstrates how actively you are pursing relationships, rather than simply waiting for others to follow you. This can be a good way to measure your efforts to increase your followers. In fact, one of the easiest ways to attract more followers is to become an active follower, yourself. c. Retweets. (Click “Retweets” in your sidebar to see who retweeted your Tweets.) This will tell you how many of your followers “retweeted” one of your posts to their followers. It can exhibit how interesting your followers find your tweets, and how far beyond your own followers your tweets have reached. d. Replies/Mentions. Note if anyone “mentioned” you in their tweets (by including “@username”) or “replied” to one of your tweets. e. URL analytics. Log into your URL shortener account (e.g., bit.ly, ow.ly) to see how many people clicked on your links. Useful Links (click on a title to view the resource): Twitter support http://hootsuite.com/ http://gigaom.com/collaboration/eight-ways-twitter-is-useful-professionally/ http://www.bethkanter.org/twitter-tip-few-man/ http://blog.social-marketing.com/2008/02/twitter-for-health.html http://www.slideshare.net/jeffingramdc/twitter-for-organizations-1107766 22 NHVREI Social Media Spotlight: Blogging Partner: The DC Center – Washington, DC Website: http://www.thedccenter.org Blog: http://www.thedccenter.org/blog Why blog? The DC Center says… …blogging has never been viewed as “optional” for us. It has always been our most effective way of communicating with our membership. Example blog: 1. Background a. Blog, a blend of the term “web log,” is an online journal intended for public view, which often includes interactive features, like comments. 2. Gather Your Thoughts a. First, think out these key questions: i. What's the purpose of your organization's blog? ii. Your organizational website isn’t enough because… iii. Who is your intended audience and how do they access information? iv. Who will write for the blog? v. What is the voice of the blog? vi. How often will you post to the blog? vii. What happens if something controversial comes up, how does your blog react? 23 3. Set it Up a. Choose the type of blog that best suits your needs. The DC Center has an institutional information blog and mostly posts about events/activities. i. Institutional Information Blog: This is a blog that provides information about the organization's programs and services. The content includes announcements, events, program happenings, staff changes, commentary, stories about volunteers or donors, and answers to stakeholder questions. The blogging platform makes it easy for non-technical staff to update a web presence. ii. Aggregate Content Blog: These blogs distribute news related to the content of the organization. These become the living version of the organization's topic areas and are typically made up of short posts that link to other content sources for the full story. iii. Community Blog: These are blog communities or group blogging sites created by a nonprofit that lets their stakeholders blog on their site. iv. Specialized Content - Campaign, Event, or Program: These blogs are focused around a specific event, program, or campaign. While they may include organizational information, they primarily serve as a focused source on a particular issue or topic. v. Personal Blog: Though this approach is the gold standard for personal professional blogs, it can be adapted for organizations. These are blogs where an individual from the organization or small group of staff offer their personal commentary about their organization, programs, issue areas, or field. It's blog with personality included. b. Choose a blog platform. i. You can host your blog directly on your website, like the DC Center does. This simplifies the URL (www.thedccenter.org/blog). ii. However, you could use any web-based blog platform (most are free). Here are some of the most popular free platforms: 1. Blogger: Blogger is a popular and free blogging service owned by Google. Blogger's big draw is ease of use and nearly instant setup. You can go from blog-less to publishing your first post in less than 15 minutes. Blogger supports drag-and-drop template editing, dynamic updating, geo-tagging for location-based blogging, and easy publication from editing tools like Google Docs, Microsoft Word, and Windows Live Writer. Blogger supports up to 100 users, so if you grow your blog beyond single editorship you can expand without any hassle. 2. Tumblr: While Blogger is an easy way to set up a full-fledged blog, Tumblr is an interesting fusion between a full-fledged blog and a Twitter feed. Known as shortform or micro blogging, the style of blogging on a Tumblr blog is focused on short and frequent posts that are normally longer (or more focused on media like images or video) than Twitter updates but not as involved and formal as a regular blog post. Check out Tumblr's About Us for an interesting picture of micro blogging. 3. WordPress: WordPress is a popular open source blogging platform. As a WordPress user, you have the option of setting up a WordPress blog on your own server (for free) or creating a WordPress-hosted blog at WordPress.com. Thanks to an absolutely enormous community of followers and developers, WordPress has themes, plug-ins, and gadgets of all stripes. It isn't as simple to set up and configure 24 as some of the other options, but once you get it up and running you're rewarded with a nearly limitless array of options, configurations, and plug-ins. WordPress is a scalable solution that allows you to do everything from maintain a single blog with a single user to an entire stable of blogs with multiple users all overseen by a primary administrator. 4. Posterous: Posterous aims to be an absolutely no-fuss and zero-stress way to blog. You don't need to sign up, you don't need to know any code, you don't need to know how to do anything but send an email to set up your own Posterous blog and start sharing your ideas and media. Simply email post@posterous.com from any email account and Posterous will create a YourName.Posterous.com blog for you. While email-based blogging might not be for everyone, it's impressive how much you can do through the Posterous system with a single email. Check out their FAQ file to see how you can do everything from multimedia posts to tagging your entries right from your email subject line. c. As with other social media platforms, your blog should represent your brand image in a simple, non-distracting way. 4. Connect the Dots a. The DC Center has set up its blog to automatically feed to Facebook, Twitter and specific web pages. For example, when the DC Center tags a blog as “HIV” and “African American,” the blog automatically posts to its HIV/AIDS program page and Twitter account, and African American community page and Black LGBT Twitter account. Executive Director Daniel Mariner believes that this targeted information distribution prevents people from unsubscribing for DC Center updates, because they only receive the specific information they want. b. Connecting your blog to Facebook and Twitter not only promotes your blog, but also takes care of your daily Facebook/Twitter update and prevents you from having to create additional content. 5. Maintaining Your Blog a. Even if you do not choose an Aggregate Content Blog, it would still be helpful to set up Google Alerts for relevant terms, like “HIV vaccine research,” “HIV vaccine development,” “HIV funding,” et cetera. This way, you are aware of relevant news as soon as it breaks and can craft appropriate blog responses. People are more likely to follow you if you blog about relevant and timely topics. b. Blogs do not have to be updated as frequently as Facebook or Twitter, but do blog when you have something to say. The DC Center blogs about every event and all news attention the Center’s programs receive. c. The DC Center also blogs about other relevant local LGBT/HIV/AIDS news and events. As a result, the Center is viewed as a local LGBT community calendar. Furthermore, as with other social media, forming relationships with similar organizations is very useful, and can often lead to collaboration (which means less content generation for you!). If another organization writes a blog post that is relevant to your audience, you can – with its permission – simply repost it. If an organization reposts your entry to its blog, your message is reaching a larger audience – and you might obtain additional followers. 25 6. Making it Manageable a. Even small organizations can blog without being burdened – the DC Center employs fewer than 2 full-time staff. Here are some ways to help manage the workload: i. Set up automatic feeds for Facebook and Twitter. ii. Monitor retweets, Facebook re-posts and website statistics to determine what content is generating interest and is therefore worth spending time on. Don’t continue to pursue a strategy that isn’t working (the DC Center uses TweetDeck for such monitoring). iii. Use your interns and younger volunteers. Most are social media savvy, so they can typically assist in managing your organization’s social media with ease. You can utilize unpaid interns or college volunteers – even part-time – to assist you with these activities. However, you shouldn’t completely hand your social media activities to volunteers. 1. Be sure to review their work to ensure that they are posting relevant and accurate information and are maintaining your organizational voice. 2. Your social media does have a voice and a tone, so ideally a permanent staff member should oversee all these activities. If temporary volunteers completely manage your social media, your social media will lack a consistent strategy and tone. iv. Have fun with it! Engage your entire organization and its network, including volunteers and the rest of the community. Even a personal blog can have guest bloggers. Useful Links (click on a title to view the resource) How to set up a nonprofit blog Should your nonprofit launch a blog? BlogSpot How to publish blog posts to Facebook and Twitter TweetDeck Five best blogging platforms NHVREI Partner Blogroll (click on an organization to view its blog) AIDS Foundation of Chicago (Chicago, Ill.) The DC Center (Washington, DC) AIDS.gov 26 NHVREI Social Media Spotlight: Integrating your Social Media Strategies Partner: AIDS Project of LA (APLA) – Los Angeles, CA Website: http://www.apla.org 1. Integrate. All your social media should be linked prominently from your homepage. This way, any visitors to your site will immediately notice your social media presence, giving them the opportunity to follow you. 2. Cross-pollinate. You can use similar content in various channels. For example: a. You can link your blog to your Facebook and Twitter pages using a service like TwitterFeed. It’s a great way for your blog to reach a whole new audience. b. APLA has found that calls to action (e.g., email your senator/representative about issue x) receive a much greater response when emails are supplemented with Facebook and Twitter promotion. When people submit responses, they are automatically added to APLA’s emailing list, expanding the organization’s database. 27 3. Join the Conversation. Social media is meant to be – social! Make sure you are joining the conversation rather than simply disseminating information. It’s a good idea to spend a few minutes each day or every few days to acknowledge the people who comment on any of your social media channels. Pose questions to your followers to start a discussion, and join in yourself. Active participation is a great way to gain a large social media following. 4. Promote Creatively. Submit key blog posts and articles to social news sites like Digg, StumbleUpon and Reddit. These sites are great for search engine optimization (SEO) and driving traffic to your blog/website. 5. Fundraise Socially. A number of donors prefer to give online, and APLA has formed a robust online fundraising campaign. 6. Never Miss an Opportunity. Social media use shouldn’t just be an afterthought. Use your social media channels to promote your events, organizational news, earned media, et cetera. For example, you can use all social media platforms to promote a single event by: a. Creating a Facebook event page and Tweeting in advance to announce the event, its purpose and timing. b. Asking participants to Tweet live throughout the event and use a specified hashtag. Don’t forget to Tweet live yourself! c. Taking photos and video throughout the event and posting them to Facebook, the photo sharing site flickr and YouTube. APLA has found that sending an email to event attendees telling them to check out the photos on Facebook is a great way to attract new followers, since they are likely to visit your page to see if they’ve been captured. (You can enlist the help of high school and college-age volunteers to help you edit your video footage and upload photos.) d. Write a blog afterward, summarizing the event, its accomplishments and attendees. It’s a good idea to end your post by mentioning your next event and promising additional information soon. Even if you don’t have another event in the works yet, you can say something general like, “Follow APLA on Facebook or Twitter to receive updates on our next community activity!” Useful Links (click on a title to view the resource): 100 Social Media Tactics for Nonprofits Social Media for Nonprofits 28 Observance Day Blurbs: Sample Language for Use on Upcoming Observance Days General: Support HIV vaccine research. Learn how at bethegeneration.nih.gov Be the generation to end AIDS by supporting HIV vaccine research. Need for a Vaccine: There is no vaccine for HIV or cure for AIDS. Vaccine research is essential in the fight against AIDS, along with treatment, care, and prevention, including research into other prevention methods—like microbicides and pre-exposure prophylaxis (PrEP). A vaccine is essential to stop the HIV epidemic, along with other prevention tools and increased access to treatment. We need the whole toolbox to stop this disease. Each and every study brings us closer to finding an effective vaccine by providing scientists with important insights into how the body responds to different vaccine candidates, delivery methods and the virus itself. Volunteers: Recent advances in vaccine, microbicide and pre-exposure prophylaxis research would not have been possible without the help and commitment of tens of thousands of volunteers. More volunteers will be needed in order for researchers to continue to make strides in the search for an effective HIV vaccine that works for everyone. HIV/AIDS disproportionately impacts African Americans, Hispanics, and men who have sex with other men; volunteers of all races and ethnicities are needed to participate in studies, to ensure that any future vaccines are safe and effective in everyone. Safety: HIV vaccines do not contain the actual HIV virus, so they cannot cause anyone to become infected with HIV. Getting Involved: Everyone can do something to support HIV vaccine research—learn more about it, talk about it with your family and friends, support volunteers, or join a community advisory board. Learn how at www.bethegeneration.nih.gov 29 Calendar of HIV/AIDS Observance Days and Meetings: A List of Important Dates for Your Organizations and Constituents 30 HIV/AIDS Observance Days February 7 National Black HIV/AIDS Awareness Day March 10 National Women & Girls HIV/AIDS Awareness Day March 20 National Native HIV/AIDS Awareness Day May 18 HIV Vaccine Awareness Day May 19 National Asian & Pacific Islander HIV/AIDS Awareness Day June 8 Caribbean American HIV/AIDS Awareness Day June 27 National HIV Testing Day September 18 National HIV/AIDS Aging Awareness Day September 27 National Gay Men’s HIV/AIDS Awareness Day October 15 National Latino AIDS Awareness Day December 1 World AIDS Day TIP: Are you planning to host an event for an HIV/AIDS observance day? Reaching out to a variety of traditional and social media outlets is a great way to earn coverage and build community participation and support. Many local and regional newspapers have free social calendars, where you can promote events and provide contact and reservation information. Leverage social media platforms like Facebook, Twitter, and foursquare to promote an upcoming activity and connect with other community groups to support your efforts. The more visible your event can be, the more successful the turnout. 31 2011 HIV/AIDS Conferences May 13 – 14, 2011 20th Annual HIV Conference (Orlando, FL) May 16 – 18, 2011 14th Annual Conference on Vaccine Research (Baltimore, MD) May 22 – 24, 2011 6th International Conference on HIV Treatment and Prevention Adherence (Miami, FL) June 1 – 3, 2011 HVTN Meeting (Washington, DC) June 5 – 10, 2011 HPTN Annual Meeting (Washington, DC) July 16 – 19, 2011 2011 National LGBTI Health Summit (Bloomington, IN) July 23 – 27, 2011 National Medical Association Annual Convention (Washington, DC) August 2011 (date TBD) National Gay Men’s Health Summit (location TBD) August 14 – 17, 2011 National HIV Prevention Conference (Atlanta, GA) September 12 – 15, 2011 AIDS Impact 2011 (Santa Fe, NM) November 10 – 13, 2011 United States Conference on AIDS (USCA) (Chicago, IL) TIP: Social media platforms are also a great way to share the latest information from scientific conferences. Consider tweeting or posting Facebook status updates about the HIV vaccine research presentations you attend at the HVTN, NHPC, and other conferences. 32 NHVREI Key Message Platform Key Message 1. HIV vaccine research is essential in the fight against AIDS along with prevention, treatment, and care. 2. The best long-term hope for controlling the AIDS epidemic is the development of safe, effective, and affordable preventive HIV vaccines. 3. Currently, there is no HIV vaccine. 4. HIV vaccines do not infect study participants with HIV. 5. The safety of trial volunteers is always the top priority in HIV vaccine research. Support Points a. No major viral epidemic has been defeated without a vaccine. b. It is important that community efforts support HIV vaccine research. c. HIV prevention, treatment, and vaccine research are all essential for understanding and fighting the HIV/AIDS epidemic. a. Every year, an estimated 56,000 people become infected with HIV in the United States. b. Every 9 ½ minutes, someone in the U.S. is infected with HIV. c. An HIV vaccine is critical for the communities most impacted by HIV in America. d. Historically, vaccines have been the most powerful weapon against infectious diseases like polio, measles, and Hepatitis B. a. There are many challenges to developing an HIV vaccine, but, each new study teaches us more about how the body can fight the virus, making it possible to develop better HIV vaccine candidates. b. HIV vaccine research requires a two-pronged approach: basic research to help us learn more about HIV, as well as development and testing of potential HIV vaccines. Clinical research is needed for both of these, and many clinical studies contribute simultaneously to both goals. c. In 2009, a vaccine tested in Thailand prevented HIV infection in some study participants. This gives us hope that we can one day find a vaccine that works well for everyone. d. Dozens of different vaccine candidates and approaches are at various stages of scientific development. e. To know if an HIV vaccine will work across a variety of people, clinical trials need participation from a diverse population of volunteers, including those from groups most at risk for HIV infection. a. HIV vaccine candidates do not contain the HIV virus. b. In the past twenty years, tens of thousands of volunteers have safely participated in HIV vaccine research trials. c. Community support is essential to break down stigma and myths about HIV vaccine research. d. Involvement from community leaders across the United States is vital to help educate and inform community members about HIV vaccine research. a. Every study seeks to protect the safety of its volunteers. b. Institutional review boards are independent groups whose aim is to protect the safety and well c. 6. Be the generation to find a vaccine to prevent HIV. being of trial volunteers. They do this by carefully reviewing the details of trials from start to end; in addition, the U.S. Food and Drug Administration, which regulates all U.S. Governmentsponsored trials, carefully reviews all trials for potential safety issues. Clinical trials may involve unknown risks. a. Learn the facts at www.bethegeneration.nih.gov b. Talk to friends and family about the need for an HIV vaccine. Let them know you are supportive of HIV vaccine research. c. Join a community advisory board or other education efforts in your area. d. Community advisory boards provide community perspective, helping to assure community understanding and acceptability Encourage vaccine research participants and/or become one yourself. HIV vaccine research requires partnership between governments, businesses, universities, international agencies, national and local organizations, advocates, and communities. 33 Credible Sources in HIV Prevention Research: Useful Links to Groups that Work in HIV Prevention AIDS.gov http://aids.gov/ Through the use of innovative, new media strategies, AIDS.gov seeks to increase HIV testing among atrisk populations and improve care for those living with HIV. The AIDS.gov web portal offers access to Federal HIV information, policies, programs and resources in order to raise awareness of the disease. AIDSinfo http://www.aidsinfo.nih.gov/ AIDSinfo is a U.S. Department of Health and Human Services (HHS) project that offers the latest federally approved information on HIV/AIDS clinical research, treatment and prevention, and medical practice guidelines for people living with HIV/AIDS, their families and friends, health care providers, and researchers. AIDSinfo serves as the main dissemination point for federally approved HIV treatment and prevention guidelines, and provides information on clinical research trials for HIV infected patients. All of the information provided by AIDSinfo is from federal government agencies, including the National Institutes of Health, Centers for Disease Control and Prevention, Health Resources and Services Administration among others. AVRS – The AIDS Vaccine Research Subcommittee (National Institute of Allergy and Infectious Diseases) http://www.niaid.nih.gov/topics/hivaids/research/vaccines/advisory/avrs/Pages/default.aspx A subcommittee of the NIAID AIDS Research Advisory Committee (ARAC), AVRS aids in the formation of a comprehensive research program in order to accelerate the development of an HIV/AIDS vaccine. Members of the group advise NIH research programs on knowledge gaps, scientific opportunities and future courses of research. DAIDS – The Division of Acquired Immune Deficiency Syndrome www3.niaid.nih.gov/about/organization/daids DAIDS is a Division within the National Institute of Allergy and Infectious Diseases (NIAID), a component of the National Institutes of Health (NIH) in Bethesda, MD. DAIDS was formed in 1986 to develop and implement the national research agenda to address the HIV/AIDS epidemic. Specifically, the mission of DAIDS is to help ensure an end to the HIV/AIDS epidemic by increasing basic knowledge of the 34 pathogenesis and transmission of the human immunodeficiency virus (HIV), supporting the development of therapies for HIV infection and its complications and co-infections, and supporting the development of vaccines and other prevention strategies. While the following link is not specific to HIV vaccine research, information about the NIAID’s research program can be found at http://www.niaid.nih.gov/topics/hivaids/Pages/Default.aspx DHAP – The Division of HIV/AIDS Prevention (Centers for Disease Control and Prevention, CDC) http://www.cdc.gov/hiv/ DHAP, a division of the CDC’s Coordinating Center for Infectious Diseases, works to prevent HIV infection and reduce HIV-related illness and death. By providing national leadership and support for HIV prevention research, HIV prevention programs and effective biomedical interventions to reduce HIV transmission and progression. USAID – United States Agency for International Development http://www.usaid.gov/our_work/global_health/aids/TechAreas/research/vaccinefactsheet.html USAID provides support to the International AIDS Vaccine Initiative (IAVI), a non-governmental organization, to accelerate the development of an effective vaccine for HIV prevention. USAID funds are used to support Vaccine Development Partnerships that are focused on advancing HIV vaccine candidates to clinical trials. Among the activities supported within a five-year Cooperative Agreement are site development and community preparations for HIV vaccine efficacy trials in developing countries and public policy research to accelerate and support HIV vaccine research/development and future access. Vaccine clinical trial centers have been established in Kenya, Uganda, Rwanda, Zambia, South Africa, and India. USMHRP - U.S. Military HIV Research Program http://www.hivresearch.org/ USMHRP is a tri-service research effort striving to develop a globally effective and safe HIV vaccine to protect at-risk military and civilian populations and to improve public health worldwide. The Program is headed by the Walter Reed Army Institute of Research in collaboration with the Henry M. Jackson Foundation for the Advancement of Military Medicine. USMHRP is dedicated to HIV vaccine development, prevention, disease surveillance, and care and treatment for HIV. VRC – The Dale and Betty Bumpers Vaccine Research Center www.niaid.nih.gov/vrc/clintrials/clinstudies.htm The VRC, a component of the National Institutes of Allergy and Infectious Diseases (NIAID),conducts preventive HIV vaccine research and development at a facility located on the campus of the National Institutes of Health (NIH) in Bethesda, MD. HVTN – The HIV Vaccine Trials Network http://www.hvtn.org/ The HVTN is an international organization of scientists and researchers who have come together to develop a safe and effective preventive HIV vaccine. It facilitates the production and testing of vaccines against HIV/AIDS and conducts all phases of clinical evaluation, from testing experimental vaccines for safety to testing the effectiveness of vaccines in preventing HIV. First established in 1999, the HVTN is 35 funded by the Division of AIDS (DAIDS) of the National Institute of Allergy and Infectious Diseases (NIAID). Hope Takes Action www.hopetakesaction.org Hope Takes Action is a social marketing campaign associated with HVTN 505, an HIV vaccine trial managed by the HIV Vaccine Trials Network (HVTN). HPTN – HIV Prevention Trials Network http://www.hptn.org/index.htm HPTN is a global clinical trials network funded by the Division of AIDS (DAIDS) of the National Institute of Allergy and Infectious Diseases (NIAID). HPTN develops and tests the safety and efficacy of non-vaccine HIV prevention treatments like antiretrovirals. The Legacy Project www.vaccineforall.org The Legacy Project works to encourage full participation of African Americans and Latinos in HIV vaccine development – from trial volunteers to scientists. The organization addresses the history of abuse of minorities in research trials and is working to build trust between the scientific community and people of color. IAVI – International AIDS Vaccine Initiative http://www.iavi.org/ IAVI is a global not-for-profit organization working to speed the search for a vaccine to prevent HIV infection and AIDS. Founded in 1996 and operational in 23 countries, IAVI and its network of partners research and develop vaccine candidates. IAVI also advocates for a vaccine to be a global priority and works to ensure that a future vaccine will be accessible to all who need it. AVAC http://www.avac.org/ A community-based organization, AVAC has been working for 10 years to accelerate the ethical development and global delivery of vaccines against HIV/AIDS. AVAC provides independent analysis of developments in HIV/AIDS prevention and treatment, public education on vaccine research, policy advocacy, and helps local communities support and stay informed about HIV vaccine and other HIV prevention clinical trials. CAVD – The Collaboration for AIDS Vaccine Research http://www.cavd.org/Pages/default.aspx CAVD is an international group of experts and scientists that works to develop innovative and viable HIV vaccine candidates to progress to clinical trials. CAVD aims to advance HIV vaccine research by balancing individual creativity with information sharing and laboratory standardization. Global HIV Vaccine Enterprise (The Enterprise) http://www.hivvaccineenterprise.org/ 36 The Enterprise is an international network of independent organizations working together toward the development of a safe and effective HIV vaccine. In 2010, the Enterprise released a Scientific Strategic Plan (the Plan) for HIV vaccine development. UNAIDS – The Joint United National Programme on HIV/AIDS http://www.unaids.org/en/ A United Nations (UN) partnership which works to unite the UN, national governments, the private sector, civil society, global institutions and people living with HIV in order to improve access to HIV prevention, treatment, care and support. CHAVI – Center for HIV/AIDS Vaccine Immunology https://chavi.org/ CHAVI is virtual center consisting of a consortium of universities and academic medical institutions and is funded by the National Institute of Allergy and Infectious Diseases (NIAID). It was established in 2005 and seeks to overcome challenges in HIV vaccine design and improve HIV vaccine development. GCM – Global Campaign for Microbicides http://www.global-campaign.org/ GCM promotes ethical and speedy development of and access to HIV prevention – particularly for women – through collaboration with civil society, researchers, policymakers and industry. GCM works to share resources, inform and develop policy, identify and promote better practices, and build and strengthen the capacity of HIV-prevention. 37 Credible Sources in HIV Prevention Funding: Useful Links for Information AIDS.gov http://www.aids.gov/ AIDS.gov serves as an information gateway to guide users to Federal domestic HIV/AIDS information and resources. Its goal is to ease access to information on Federal HIV/AIDS prevention, testing, treatment, and research programs, policies, and resources. Centers for Disease Control and Prevention (CDC) http://www.cdc.gov/od/pgo/funding/grantmain.htm The CDC awards grants and cooperative agreements to eligible organizations annually, based on funding made available through its appropriations. See the Grants and Procurement office of CDC for more information. CDC National Prevention Information Network (NPIN) Funding Database http://www.cdcnpin.org/scripts/locates/LocateFund.asp Find private and government funding opportunities for community-based and HIV/AIDS, STD and TB service organizations. Included are details about eligibility requirements, application processes and deadlines. Grants.gov http://www.grants.gov/ Grants.gov allows organizations to electronically find and apply for federal grants. It is the single access point for over 1,000 grant programs offered by all Federal grant making agencies. Health Resources and Services Administration (HRSA) – HIV/AIDS Bureau http://www.hrsa.gov/grants/default.htm The HIV/AIDS Bureau (HAB) of HRSA was formed in August 1997 to consolidate all programs funded under the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. The CARE Act was signed into law on August 15, 1990 to improve the quality and availability of care for people with HIV/AIDS and their families. While HRSA primarily funds care services, they also fund early intervention services. 38 Kaiser Family Foundation – HIV Prevention Funding by State http://www.statehealthfacts.org/comparemaptable.jsp?ind=821&cat=11 Kaiser Family Foundation offers a 50 state comparison of funding opportunities for state HIV prevention programs. National Institutes of Health (NIH) Office of Extramural Research http://grants.nih.gov/grants/guide/index.html The NIH Office of Extramural Research (OER) offers grant and contract opportunities through funding opportunity announcements. The OER website and database allows users to search for HIV/AIDS funding opportunities throughout the NIH, including those offered by the National Institute of Allergy and Infectious Diseases (NIAID), National Institute on Drug Abuse (NIDA), National Institute of General Medical Sciences (NIGMS), National Institute on Minority Health and Health Disparities (NIMHD) and National Library of Medicine (NLM), among other NIH Institutes and Centers. Office of Minority Health (OHM) – US Department of Health and Human Services (HHS) http://www.omhrc.gov/ The OMH aims to improve and protect the health of racial and ethnic minority populations through the development of health policies and programs that will eliminate health disparities. OMH organizes demonstration projects through joint agreements with operating divisions of the Department, funds grants for health projects conducted by minority faith and community- based organizations and coalitions, and funds cooperative agreements with major national minority organizations. OMH funds HIV Prevention projects. Substance Abuse and Mental Health Services Administration (SAMHSA) http://www.samhsa.gov/grants/ SAMHSA has a HIV/AIDS program that funds HIV Prevention programs nationally. SAMHSA believes that comprehensive HIV prevention and treatment includes a variety of complementary components to help drug-using populations increase their protective behaviors and reduce their risks for HIV/AIDS. U.S. Conference of Mayors (USCM) http://www.usmayors.org The USCM HIV/AIDS Prevention Grants Program strengthens local capacity for HIV/AIDS prevention activities through the funding of projects involving community-based organizations, local health departments, and others. Since USCM offers only one-year funding, applicants should consider USCM’s grants as seed money for innovative projects that would otherwise not be attempted. *The National Institutes of Health offers a free grant writing tip sheet on its website. Access the document at http://grants1.nih.gov/grants/grant_tips.htm. 39 Community Engagement in HIV Vaccine Research: Opportunities for Individuals to Get Involved in HIV Vaccine Awareness What Can You Do To Support HIV Vaccine Research? 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. Educate yourself about HIV/AIDS vaccine research by visiting www.bethegeneration.nih.gov. Get the facts! Bring up the subject at religious/civic organization meetings. Find out if vaccine studies are being conducted in your area. Blog/Twitter about HIV/AIDS vaccine research. Talk to your family and friends about HIV/AIDS vaccine research. Participate in your local HIV Vaccine Awareness Day (HVAD) activities. Visit a Website about HIV/AIDS vaccine research. Keep track of all the recent news about HIV/AIDS vaccine research. Wear an HIV/AIDS vaccine research awareness pin to work. Find out if you would be a good candidate for an HIV/AIDS vaccine trial. Drive a friend to their HIV vaccine research appointment. Attend an information session about HIV vaccine research. Help and encourage HIV vaccine trial volunteers. Educate others about the research and the need for an HIV vaccine. Subscribe to AVAC’s Weekly NewsDigest. Find out at bethegeneration.nih.gov if there is an HIV vaccine trial unit (HVTU) in your area and consider joining their community advisory board. 40 Sample HIV Vaccine Research Education Presentation A PowerPoint Template for Community Engagement and Education 41 CDC Surveillance Report, 2009 (http://www.cdc.gov/hiv/topics/surveillance/basic.htm) 42 CDC Fact Sheets, 2010 (http://www.cdc.gov/hiv/resources/factsheets/PDF/us.pdf) CDC Surveillance Report, 2009 (http://www.cdc.gov/hiv/surveillance/resources/reports/2009report/pdf/commentary.pdf) ) 43 CDC HIV Fact Sheets, 2010 (http://www.cdc.gov/hiv/topics/aa/index.htm) CDC Surveillance Report 2009, (http://www.cdc.gov/hiv/surveillance/resources/reports/2009report/pdf/commentary.pdf) ) CDC HIV Fact Sheets, 2010 (http://www.cdc.gov/hiv/hispanics/resources/factsheets/pdf/hispanic.pdf) 44 “HIV and AIDS Among Gay and Bisexual Men,” CDC 2010. (http://www.cdc.gov/nchhstp/newsroom/docs/FastFacts-MSM-FINAL508COMP.pdf) 45 46 47 48 49 50 51 52 HIV Vaccine Quiz: How Knowledgeable Are You About HIV Vaccine Research? 1.) Scientists have already developed a vaccine that has been proven highly effective at preventing HIV infection. Answer: False 2.) Only men who have sex with men or drug users who share needles will benefit from the discovery of vaccines that can prevent HIV infection. Answer: False 3.) The HIV vaccines used in clinical trials cannot cause HIV infection or AIDS. Answer: True 4) Researchers do not expose volunteers to the HIV virus as part of the study. Answer: True 5.) Unlike vaccines against some other diseases, preventive HIV vaccines do not contain either live or killed forms of the HIV virus. The vaccines are designed to trigger immune responses that will help your body recognize and fight the HIV virus. There is no HIV virus or HIV infected material in investigational preventive vaccines, so there is no way that they can cause HIV/AIDS. Answer: True 6.) To be eligible to participate in preventive HIV clinical trials, volunteers must be HIV positive. Answer: False 7.) All preventive HIV vaccines go through a very thorough testing process before being tested in people. The testing process includes a "pre-clinical" phase that involves laboratory testing and testing in animals before the vaccines are tested in humans. Answer: True 8.) Before people volunteer for preventive HIV vaccine clinical trials, they get detailed information on the side effects they might experience. Answer: True 9.) Clinical trial volunteers are never encouraged to take risks that would increase their chances of becoming infected with HIV. Answer: True 10.) All clinical trial volunteers receive extensive counseling throughout the trial about safe behaviors and steps they can take to reduce their risk of HIV infection. Answer: True 11.) Only “high risk” people can participate in HIV vaccine trials. Answer: False 53 Additional Resources and Materials 54 Ongoing Trials of Preventive HIV/AIDS Vaccines Worldwide (September 2010) Source: AVAC (http://www.avac.org/ht/a/GetDocumentAction/i/3436) 56 CDC Interim Guidelines on PrEP Source: AVAC (http://www.avac.org/ht/d/sp/i/32262/TPL/AN/pid/32262/displaytype/iframe) January 27, 2011 Dear Advocates, Today the US Centers for Disease Control and Prevention issued interim guidance on pre-exposure prophylaxis (PrEP) as an HIV prevention strategy for gay men and other men who have sex with men (MSM). These interim guidelines address key considerations for health care providers considering daily oral TDF/FTC as PrEP for their MSM clients. With this interim guidance in place, US agencies and organizations should now move swiftly to design and implement demonstration projects in key highincidence settings. These projects would gather additional needed data on PrEP for HIV prevention and lay the groundwork for eventual introduction of PrEP as an additional HIV prevention strategy. This update summarizes some of the key points of the CDC interim guidance which includes this important statement: “PrEP has the potential to contribute to effective and safe HIV prevention for MSM if 1) it is targeted to MSM at high risk for HIV acquisition; 2) it is delivered as part of a comprehensive set of prevention services, including risk-reduction and PrEP medication adherence counseling, ready access to condoms, and diagnosis and treatment of sexually transmitted infections; and 3) it is accompanied by monitoring of HIV status, side effects, adherence, and risk behaviors at regular intervals.” Advocates’ input is needed to map out next steps in the US and to discuss the relevance of these interim guidelines for other countries. We hope you will join us for a teleconference on “Translating PrEP Research into Practice”. The call will feature debate and discussion with brief remarks from key discussants on what needs to happen next to translate the iPrEx trial results outside of clinical trial settings. Please join us on Tuesday, February 8 from 10 to 11am US Eastern time (visit www.timeanddate.com to confirm the time in your area). Click here to register for the call. As we provide this update on an important biomedical advance, AVAC also offers condolences and steadfast support to Ugandan gays and lesbians who lost a leader and shining light with the brutal and senseless murder of David Kato. There will be no end to AIDS without an end to homophobia, stigmatization and human rights abuses worldwide. More on the CDC interim guidance When a new public health strategy is identified, national and international public health agencies review the evidence and provide guidance. These guidance statements help shape policy and guide eventual introduction. The guidance published by the US CDC in this week’s Morbidity and Mortality Weekly Report (MMWR) is described as an interim tool for clinicians who may want to consider oral TDF/FTC as PrEP for some of their clients. CDC and other federal agencies are working on a more complete set of US Public Health Service guidelines for PrEP use in MSM, which are expected later this year. 57 Key statements in the MMWR include: “Until the safety and efficacy of PrEP is determined in trials now under way with populations at high risk for HIV acquisition by other routes of transmission, PrEP should be considered only for MSM.” Details on other trials available here. “The iPrEX trial results provide strong evidence that support for adherence to the prescribed medication regimen must be a routine component of any PrEP program.” The guidelines also specify the need for “PrEP medication adherence counseling” and the “support [of] PrEP medication at each follow-up visit, more often if inconsistent adherence is identified.” PrEP is an HIV prevention intervention and should only be given to individuals who are HIVnegative. “To minimize the risk for drug resistance, PrEP should not be started in persons with signs or symptoms of acute viral infection unless HIV-uninfected status is confirmed by HIV RNA testing or a repeat antibody test performed after the viral syndrome resolves.” And guidelines indicate the need to “document negative HIV antibody test(s) immediately before starting PrEP medication.” PrEP is not meant for everyone. The CDC’s interim guidance states, “For MSM whose behaviors place them at high risk for HIV infection and who do not use other effective prevention methods consistently, PrEP might reduce their risk for HIV infection.” The effects of long-term use of TDF/FTC as PrEP is still unknown, so regular monitoring is critical. CDC notes, “Health-care providers and patients should be aware that HIV prevention is not a labeled indication for the use of Truvada and that its long-term safety in HIV-uninfected persons is not yet known. Health-care providers should report any serious adverse events resulting from prescribed TDF/FTC for PrEP to the Food and Drug Administration’s MedWatch.” The CDC’s interim guidance is an important step in thinking about the implications of the iPrEx results. Please join us for the teleconference on February 8, and make your voice heard in this critical debate and discussion about the ways forward. To register for the teleconference, click here. This teleconference is the first in a series of calls that AVAC has planned in the coming weeks and months. These calls will build on the current issue of Px Wire, which outlines some of the important questions and next steps in biomedical HIV prevention research. Please join us! If you have any questions in advance, please send them to avac@avac.org. Best, AVAC 58 Advocate’s Guide to Statistical Terms Source: AVAC (http://www.avac.org/ht/a/GetDocumentAction/i/4255) No study can produce a simple “yes” or “no” on whether or not a product “worked”. To decipher the headlines and discussions regarding the data from this or any trial, it is useful to understand some statistical terms used to describe a trial result. For the MDP 301 study, the data analysis will include comparisons of rates of infections in participants enrolled in the PRO 2000 and placebo groups. One key term is statistical significance. If a result is described as statistically significant, it means that an observed difference (for example, between two arms of a microbicide trial) is very likely due to the product itself and is not a coincidence. Significance is always given with a confidence level. A 95 percent confidence level, which is standard for many trials, means that there is at most a 5 percent likelihood of a statistically significant result having occurred solely by chance. The trial team will also report on the confidence intervals associated with its findings. A confidence interval is a way of describing the reliability of the finding, which is given as a point estimate – such as a 35 percent reduction in risk of infection. The narrower the confidence interval around the point estimate, the more likely it is that the result is accurate and would be seen again if the trial was repeated. This can all be confusing because all these values are inter-related, but to fully understand the strength of a result, one must know: (1) the point value; (2) whether or not the result is statistically significant; (3) the confidence level, which may be expressed as a percent (95% of more) or a p-value (.05 or less); and (4) the confidence interval. Other terms that might be used in discussion of initial results are per-protocol (PP) and intent-to-treat (ITT) analyses of results. Per-protocol results only include infection that occurred in those participants who received the full intervention. With a user-controlled product, where use in a trial is measured through self-reporting, it is very difficult if not impossible to determine a per-protocol result. Intent-totreat counts every infection after trial enrollment, regardless of whether a participant used the product, the placebo, or condoms. ITT is considered a gold standard because it considers every randomized participant. ITT analyses remove the risk that dropouts or subgroups may have unbalanced the two arms to any degree. In general, the safest route is to report both PP and ITT and to analyze any difference. In a microbicide trial, an approximation of a “per protocol” result would be a sub-group analysis of participants who reported high gel use and low condom use. This is controversial in microbicide trials for several reasons: it is not known whether this group differs in other ways from the rest of the trial population (thereby undermining randomization); it is not clear how accurate the self reporting of gel and condom use is; and the numbers in any sub-group analysis are unlikely to be large enough to allow for a statistically significant result. Advocates’ take-home message: No matter what the headlines say, a single number is not the full result. 59 PX Wire – January-March 2011 Source: AVAC (http://www.avac.org/ht/d/sp/a/GetDocumentAction/i/31966) PX Wire is AVAC’s quarterly update on biomedical HIV prevention research. Each quarterly issue is posted on AVAC’s website (http://www.avac.org/ht/d/sp/i/346/pid/346) and can be viewed for free. 60 61 62 63 64 Grant Sources During your partnership with NHVREI you have incorporated messages about HIV vaccine research within the overall HIV/AIDS education/prevention activities and programs of your organization. As you consider submitting future applications to CDC and other potential funders for other HIV/AIDS related projects, we hope that you will continue to include messages in support of HIV vaccine research as part of your sustainability efforts. To assist you in identifying potential sources of funding for HIV/AIDS programs, we have included two essential links that will provide you with useful information on potential funders and federal grants that may or may not specifically support HIV/AIDS initiatives or educational efforts related to HIV vaccine research. We hope that this information will help you enhance your organizational capacity as you move forward in the fight of HIV/AIDS. The Foundation Center is the leading source of information about philanthropy worldwide. Through data, analysis, and training, it connects people who want to change the world to the resources they need to succeed. The Center maintains the most comprehensive database on U.S. and, increasingly, global grantmakers and their grants — a robust, accessible knowledge bank for the sector. It also operates research, education, and training programs designed to advance knowledge of philanthropy at every level. Thousands of people visit the Center's web site http://foundationcenter.org/ each day and are served in its five regional library/learning centers and its network of 450 funding information centers located in public libraries, community foundations, and educational institutions nationwide and beyond. Grants.gov is your source to FIND and APPLY for federal grants. The U.S. Department of Health and Human Services is the managing partner for Grants.gov, an initiative that is having an unparalleled impact on the grant community. Visit http://grants.gov/ to learn more about Grants.gov and determine if you are eligible for grant opportunities offered on this site. Grant Writing Assistance Online Grant-writing Tutorial - Offered by The National Minority AIDS Council Click on this link to access NMAC's grant-writing tutorial A grant-writing tutorial, geared primarily toward beginner proposal writers, is now available on the National Minority AIDS Council web site. The tutorial, which was developed as part of NMAC's cooperative agreement with the Health Resources and Services Administration HIV/AIDS Bureau contains information for responding to requests for grant proposals for HIV-related services. http://www.TGCIgrantproposals.com Winning Grant Proposals Online - This new site from The Grantsmanship Center is a brand new resource designed to help nonprofit organizations and government agencies write better grant proposals and develop better programs. It provides a wealth of useful information, examples, and insights. You may also read, browse, or search the entire collection of over 600 proposal abstracts absolutely FREE! Of course, to actually READ the proposals, you will need to purchase a disk but a good deal of information can be gleaned from the free site. http://www.tgcigrantproposals.com/minorities.htm 65