PLHIV voices on digital media platforms


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Max Niggl, (PLWHA Victoria) describes utilising the internet to more effectively disseminate knowledge about the realities of living with HIV, reduce stigma and stereotyping, through the 'Positive Voices' video project. This presentation was given at the AFAO/NAPWA Gay Men's HIV Health Promotion Conference in May 2012.

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  • Good afternoonAnyone here know of the DVD “Changing Voices” that is on PLWHA Victoria’s website?This DVD is the basis of this abstract paper.You may think that a DVD of PLHIV speakers is almost out dated given the rapid changes in media applications we are now accustomed too.But I want to challenge that notion and show how a DVD can be adapted to a variety of digital media platforms.For those new to the sector PLHIV is the acronym for People living with HIV – please note we do not use the word AIDS. Refer to for Terminology guidelines – can someone tell the group why we would not use PLWA anymore?We wanted to challenge the stereotyping that still exists around PLHIV and to do this we wanted a cinema quality DVD that could be used in a variety of applications. Not asking for much was I?Who in the audience has a fear of public speaking? Most of us do. So can you imagine asking 12 people to tell their story in front of a camera and to know that their story is going to be seen by countless people around the world. Not only that they will be disclosing their HIV status too.So how did we do it?
  • We had quite a few issues to contend with. To start we wanted an innovative enduring record of PLHIV stories that were accessible on the internet for all. In the decade 1995 – 2005 few PLHIV stories were collected in readily accessible formats. I was concerned that we were losing these stories and the knowledge about the actualities of living with HIV in that period. Coincidentally Kathy Triffit at Positive Life NSW had the same concerns. This was also the time that HIV medications were dramatically improving the lives of PLHIV and we were no longer confronting mortality as much. In fact many of us were just getting on with our lives and not worried about telling our stories.I also wanted a resource that would promote the Positive Speakers Bureau and increase demand for our speakers in educating the broader community.I also wanted other PLHIV to feel empowered by our speakers stories and think about being more open about their own status.We know that internalised HIV stigma by PLHIV exacerbates anxiety and disclosure can lift an incredible burden of secrecy. We also know that broader community based HIV stigma and mythology becomes less when you have more open engagement with PLHIV.So I had some strong drivers to develop this concept of an enduring record of storiesDigital stories of PLHIV have been around for quite some time Positive Women Victoria in 2005 and Straight Arrows in 2008. Other State based agencies have also done the same.The digital stories were inspiring and had a huge impact on the speakers and limited audiences. However they were not utilised as effectively to engage broader audiences. Of note was that heavy restrictions were placed on the use of the Positive Women’s digital stories with the speakers having to authorise the use of the story each time.My inspiration was partly based on these stories but more so from Hopes Voice International now based in Miami Florida and their 2008 campaign “Does HIV Look like me?”However the digital quality of the Hopes Voice recordings was poor and messages were muddled because individual narratives went for too long.I wanted something that would engage audiences with short stories simply and effectively told with key messages about HIV prevention and HIV stigma in each speakers narrative. We were also going to develop a new website to market the Positive Speakers Bureau – more on that later.
  • Now to the project description. Having speakers already trained in effective communication and working with media meant we were fortunate – however some of those speakers were not available and I had to recruit younger and less experienced speakers for the DVD. So I had some capacity building to do before we could proceed to filming.I needed to have significant trust in a media company who could work with our speakers and who understood the realities of living with HIV. They also needed to think outside the square and have innovative ideas that inspired meMedia Strategies had done media training workshops for our speakers on two previous occasions. They were so impressed with our speakers that a few months later the cameraman came to us with an idea about a campaign using our speakers in community service announcements. Unfortunately we didn’t have $ 200000 to progress this idea. But the concept encouraged me to find another way.For the DVD production and being a poor NGO at the time my budget was only $3000 – almost laughable…..Quotations from other media production companies were $8000 – $10000 so I thought there goes that idea.However Media Strategies significantly discounted their quote by 50% because they had worked with us before with the media training workshops and saw many mutual benefits in doing so. Their quote for the film shoot, directing, interviewing, editing, encoding and post production cost $2900.00 –so I didn’t hesitate in saying yes and couldn’t believe their generosity. They had some great ideas and I was raring to go.In wanting to change community and behavioural attitudes towards HIV, we know that meeting a person living with HIV breaks down many of the barriers and myths about HIV. We know that PLHIV speakers make a significant impact on audiences and the safe sex messages can be delivered very effectively.And we know that audiences recall the PLHIV speakers presentations based on evaluation data from Secondary Schools nurses in Victoria because of the consistent evaluation we do.In accordance with the United Nations efforts to eliminate HIV we have a resource in the DVD that to assist in the UNAIDS zero goals of zero new HIV infections, zero discrimination and zero AIDS-related deaths by utilising our speakers stories to educate the global community with the easy access of the internet.
  • I mentioned capacity building and had some new speakers to prepare for the film shoot but first a little about what we had also done for our other speakers for their personal and professional developmentTwo media training workshops were run where the training was filmed for the speakers and each speaker received a DVD and suggestions and comments to improve their media presentations. It was inspiring to see how fast they developedA six week creative writing workshops allowed our speakers to express their thoughts in writing and challenged them with a lot of emotional responses. However thee writing was so good we created a book called Closer that is available on our websiteWe easily recruited 10 speakers for the DVD – only 4 others said no. Then Sonny Williams – my EO at the time said you have to do it too Max to show some leadership – well I didn’t want to do it so I said if I have to do it you have to do it thinking he would say no and guess what - he said yes. So then we had 12 people to interview and film.Everything was simplified to reduce anxiety and fear of the camera. A two page brief for the speakers, the cameraman and the interviewer were provided. Many meetings with the speakers and the producer were held to finesse the style of interview. The speakers were asked to rewrite their biographies in a simpler way as preparation.
  • In rewriting their biographies the speakers were asked to think about a few things. For example, a key insight that may be 'Communities need to see and hear positive people who look and sound like them.' Key story points may be:   * I have a three year old HIV negative child  * I was trusting and in a loving relationship  * I never thought this would happen to me  * I learned a lot very quickly - and made the choice to have my child  * HIV positive people need education resources and support.  All the above points reinforce and add the human interest to the Key insightwith the aim of engaging audiences with real stories told by real people NOT by actorsSo after six very intense week we were ready for lights camera and action 
  • Our speakers spoke to 9000 Victorians last financial year. Imagine the ripple effect if every person who saw our speakers spoke to their friends and family.So imagine the effect of a high quality DVD that was accessible globally by all in addressing the three points on the screen. It would be pretty amazing audience numbers.In disseminating knowledge about the realities of living with HIV our speakers constantly challenge the stereotype about PLHIV that still exists. They use the their story from the Changing Voices DVD as an introduction – thereby engaging audiences with digital media before their personal narrative commences.Our speakers work in accordance with the UNAIDS GIPA Principe – the greater involvement of People living with and affected by HIV and AIDS. In other words speak with us NOT for us.They work with the peers, the broader Victorian community and now with the DVD Changing Voices - the global community
  • So for those of you who have not seen the Changing Voices DVD this is an example of how we have used other digital media platformsPLWHA Victoria set up a YouTube account and loaded the Changing Voices DVDEach time we use another media platform we seek permission for speakers because each media platform will be reaching another audience.Fast forward to the following times: Notice Darren’s four key messagesUnaware that young people could contract HIV Denial versus working with it Empowerment as a PLHIV speaker Life with HIV is not easyHits on YouTube have not been the greatest but when you do a search you find an amazing array of PLHIV stories and ours are but some – but at least we are there
  • We intended to challenge HIV stigma with the Changing Voices DVD tooOn our website, on YouTube, on Facebook and the DVD being used by the speakers when they go to schools and other agenciesStigma directed as PLHIV is primarily about fear and the mythology about HIV and AIDS as a result of lack of educationThe most effective way to challenge stigma is education and PLHIV speakers are perfectly placed to do this – put a PLHIV in front of people and they start to think about their attitudesMany PLHIV also internalise stigma as mentioned before and again our speakers are perfectly placed to address this with their peers.
  • In 2011 PLWHA Victoria decided to try a Facebook campaignAgain we asked the speakers permission because Facebook is even more widely used than YouTube
  • Launched in April 2011 – this was a pilot project to assess the impact of an HIV stigma campaign on Facebook.Most of the Changing voices DVD speakers were featured and we certainly were impressed with the Google analytics' when our speakers were featuredA significant spike occurred with one male and one female speaker over a 2 week period from April 23 – May 8 2011 after they were featured Darren had 255 views and Deanna 280 views – interestingly the new HIV treatment guidelines had 612 views in the same periodSo we were very pleased with the impact of our speakers on Facebook as were the speakers.Other Lets stop the stigma slogans used in a word format had a far lower views.
  • So how did the speakers feel about their involvement in all of these media platform campaigns?As you can see Darren has been empowered by the process and has subsequently become one of our most requested speakers.He is passionate about talking to secondary school students and young gay men.I agree with Darren too in that putting a human face on HIV has an extraordinary impact on audiencesWe now get requests for Darren because people have seen the DVD in a variety of media platforms – so we are finding that different platforms are incredibly useful as a promotional and marketing tool
  • When we originally planed this project we were going to launch it on a separate PSB website linked back to the PLWHA Victoria’sAgain funding constraints meant that I couldn’t get a new website at the level of quality I wanted And PLWHA Victoria's website was – hmm how would I say it? Outdated and an embarrassmentSo I did some behind the scenes work to see what it would cost for a new agency website and low and behold I fund a web designer who quoted a an amazing priceOff to the EO with my news – either we get a new website or we don’t launch the DVD and guess what? This is what it will cost. Within days we were working on a new website – whoohoo!The launch of the DVD and the book of PLHIV speakers writing called Closer was coordinated with the launch of our new website and the Health Minister was booked to launch itA really successful launch and a new website attracting greater hits almost immediatelyA lot of the hits were for particular speakers so it was great to see how having a digital media presence on the website garnered so much interestAn our speakers proudly use their DVD story when they go out to do their presentations – It really impacts on audiences and their perceptions of our speakers as highly trained speakers
  • The speakers are incredibly proud of their participation in the project and its now numerous digital media applications. They never dreamed that they would be on Facebook and YouTubeThey love using it wherever they speak600 copies of Changing voices DVD have been distributedNumerous libraries in Universities, the Victorian State library and the Canberra National library all have copiesEvery school we have spoken to in 3 years have copiesThe Victorian AIDS council counselling team use the DVD in their sessions with newly diagnosed peopleIt was distributed at the International AIDS Conference in Vienna in 2010., and to PLHIV speakers I have trained in Papua New GuineaThe DVD has had an impact beyond what I even expected
  • Dr Carnie encapsulated what we were trying to achieve:Real people talking about living with HIVDon’t hide HIV awayReduce HIV stigmaSafe sex negotiation
  • So even in country NSW
  • Inclusion of PLHIV speakers and local agencies are crucial to the development, implementation, evaluation and delivery of major rural based HIV and STI prevention projects. Projects require leadership and vision to encourage the growth of individuals to maximise their achievements. A gentle approach and ownership of the process overcame the speakers’ reluctance to develop completely different styles of presentations were crucially important.The amount of website, YouTube and Facebook hits show we can use social media to great effect and get the message out a lot further than we could with our speakers doing live presentations
  • Speak to pointsEven mobile camerasI have seen this used in Paua New Guinea in remote settings
  • Effective PLHIV Speakers are all about personal and professional development, building capacity, constantlyevaluating and implementation of new ideas – this is central to sustained success in utilising digital media with our speakers. It allows our speakers to fight HIV stigma and have a real sense of contribution towards the UNAIDS zero goals, to community development and sexual health education.
  • I might have these ideas but I could not achieve my dreams without the speakers who featured on the Changing Voices DVD. I have the privilege of going to work every day being inspired by the contribution of an amazing group of speakers. This weekend in Sydney and in two weeks time in Melbourne I start training new groups of trainee speakers and I know they will challenge me to come up with new ideas to use digital media as it evolves in this rapidly changing world. To change peoples thinking about HIV you have to have the voices of HIV Positive people.The Changing voices DVD was all about bring people to together to change attitudes towards PLHIV.At the start of this paper I wanted to challenge the notion that a DVD is outdated and to show how a DVD could be used for multiple digital media platforms. I hope I have changed your mind by thinking about the Changing Voices DVD and how we have engaged global audiences via the digital media on the internet.Thank you.
  • PLHIV voices on digital media platforms

    1. 1. PLHIV voices on digital media platforms: utilising the internet to more effectivelydisseminate knowledge about the realities of living with HIV, reduce stigma and stereotyping. Max Niggl. Positive Speakers Bureau Coordinator. PLWHA Victoria Inc.
    2. 2. Issue:• PLWHA Victoria wanted to develop an innovative, enduring record of Australian PLHIV stories utilising creative digital media platforms that are internet accessible with three aims:• Create an increased demand for PLHIV speakers to share their stories.• Facilitate PLHIV’s decision to publicly disclose after seeing other PLHIV stories.• To reduce HIV stigma and discrimination in the broader community when face to face communication with PLHIV is unavailable. PLWHA VICTORIA.INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    3. 3. Description:Train speakers to deliver effective, professionalpresentations for digital mediacommunication platforms.Develop innovative digital media campaignsfor PLHIV speakers to change community andbehavioural attitudes towards HIV.PLHIV to play an increasingly significant role ineducating the global community and theirpeers in accordance with the 2011 UnitedNations efforts to eliminate HIV. ( PLWHA VICTORIA.. INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    4. 4. Capacity building• Media training workshops• Creative writing 6 week workshop• Speakers briefing• Interviewers briefing• Cameraman briefing PLWHA VICTORIA. INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    5. 5. Key insights and messagesSpeakers were asked to do the following:1: Think of your own HIV positive story2: What is the key insight you have toshare?3: Make a quick map with your insight andkey, concise, clear points of your storyreinforcing the insight. Trim away any detailsthat are unnecessary to your message. PLWHA VICTORIA .INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    6. 6. HIV education• PLHIV speakers play a significant role in HIV education.• PLHIV play a significant role in safer sex education.• PLHIV speaker play a significant role in STI education PLWHA VICTORIA. INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    8. 8. HIV StigmaDefinition: Prejudice and discrimination directed at people living with HIV &AIDS (PLHIV), and the groups and communities that they are associated with. It can result in people living with HIV & AIDS being rejected from their community, shunned, discriminated against or even physically hurt.• Source: PLWHA VICTORIA. INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    9. 9. Facebook campaign Let‟s stop the stigma commenced March 2011 PLWHA VICTORIA.INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    10. 10. Facebook – Lets stop thestigma campaignPLWHA VICTORIA .INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    11. 11. Darren‟s quote "The Changing Voices DVD project was a great opportunity for me to put a younger face of the HIV experience out into the wider community. By sharing a bit of my story I hoped that I would provide something that all people, but especially younger people, can relate to. And by putting a face to my story they might better understand that HIV can happen to anyone. Being part of Changing Voices was an empowering process that helped galvanise me to continue developing as a Positive Speaker and meet the challenge of educating many audiences, be they in schools, health settings or other community forums." PLWHA VICTORIA. INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    12. 12. Lessons learned:• Co-launching the digitalised stories with the organisation‟s new website increased unique website visits.• A series of digitalised PLHIV interviews increased the social media presence on the organisation‟s website.• Digital stories are now used by speakers during „live‟ presentations. PLWHA VICTORIA. INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    13. 13. Lessons learned – cont.• Speakers have greater confidence and pride in presenting their DVD and communicating with audiences whose response is overwhelmingly positive.• A quantifiable increase in trainee speaker applications and speaking engagement requests from the website.• 600 DVDs distributed in Australia and overseas. PLWHA VICTORIA. INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    14. 14. Chief Medical Officer“Seeing real people talk about their own experiences is avery effective way of increasing understanding andempathy in the community in a way that a thousandbrochures or websites could not.It is important that we don‟t hide HIV away in the shadows,but talk about it openly not just in infected and affectedcommunities but in the broader community as well.Reducing stigma and discrimination is important. It makescommunication and negotiation around safer sex easier ifpartners can communicate openly without fear of negativereaction”.Dr John Carnie officially launching the DVD. 31/3/2010PLWHA VICTORIA. INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    15. 15. Email feedback• 22/09/2010• To David and All the team at People Living With HIV/AIDS VIC. Thank You for the DVDs. The DVDs are now in the; Wagga City Library, Wagga CSU campus and in the Greater Southern Area Health Service Officers Hands, ready to be handed out at Waggas World Aids Day Display. Many thanks and best wishes. Jaden Matto PLWHA VICTORIA. INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    16. 16. Recommendations:• Recruit and train speakers to deliver key HIV prevention and safer sex messages to community and peers via the internet and digital media.• Increase the capacity of presentations a speaker can physically do by utilising website based digital and social media.• Encourage more PLHIV speakers to be public about their status on the internet.PLWHA VICTORIA .INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    17. 17. Recommendations:• Provide greater internet accessibility to allow greater empowerment of PLHIV globally.• Use digitalised PLHIV narratives in a variety of ways using mobile phone cameras to state of the art recording studios.• Adapt to resource poor and remote settings. PLWHA VICTORIA.. INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION
    18. 18. Summary: PLHIV speakers onglobal digital media• Passionate and skilled speakers• Capacity building & social marketing principles• PLHIV personal & professional development• Building mutual understanding that PLHIV are just like you and I PLWHA VICTORIA .INFORMATION, ADVICE, ADVOCACY, SUPPORT & REPRESENTATION