Can new comms technology help HIV prevention and care?
Globally, though overall rates of HIV are declining, those among gay men, men who have sex with men (MSM) and the transgender community are increasing. David Rowlands asks whether innovative communication technology can bring prevention and care programmes to those at risk – and whether there is a place for 'old style' activism today.
If what you read on the internet is to be trusted – and let's face it the internet never lies – I have around eight seconds to convince you that this article is worth reading because most of us have become so obsessed with portable devices and overwhelmed by content that we now have attention spans shorter than that of a goldfish.
Microsoft surveyed 2,000 people to monitor their brain activity, in an attempt to determine the impact that pocket-sized devices and increased availability of digital media and information have had on our daily lives. It found that in 2000 the average attention span was 12 seconds, but this has now fallen to just eight. The goldfish is believed to be able to maintain a solid nine.
"It is important to understand what forms of communication technology populations of interest are using"
The use of newer forms of communication technology (e.g. internet use, whether through a computer or mobile phone, SMS, smartphone apps) has grown exponentially over the last few years. Since 2005, the number of people using the internet globally has more than doubled, rising from 16 to 39 per cent. There are almost as many mobile cellular subscriptions as there are people in the world.
However, while use of new communication technologies has increased, there are still significant differences regarding access, both between and within countries. For this reason, it is important to understand what forms of communication technology populations of interest are using, how they access and use the technology, and what the barriers and facilitators are around their use (i.e. cost, connectivity and phone capabilities).
Some data suggest that MSM use new forms of technology at even higher rates than the general population. Additionally, significant numbers of MSM use the internet and mobile apps to find romantic and sexual partners. Unfortunately little data exists on technology use among the transgender community. So, greater understanding is needed on the ways that MSM and transgender people use new forms of technology and more work needs to be done to harness the power of these technologies for HIV prevention and care.
Waking the activists within us
Successful social marketing effectively combines traditional print media with online strategies. Print media drives MSM to online blogs, videos and social networking sites where they can become more engaged in a campaign, increase their knowledge about sexual health and can link to sexual health services.
Organisations have also successfully launched online media campaigns to promote activism among MSM and the lesbian, gay, bisexual, transgender (LGBT) community with the idea that this will empower individuals and encourage them towards less risky behaviour. Platforms have been created for activists to share ideas and strategies, as well as advocate for policy changes.
Instead of building new online infrastructures and programmes, use of established social networking sites, like Facebook and YouTube, which are already popular with these populations, can further promote their mission.
Building on the increasing access to mobile phones around the world, programmes are beginning to incorporate telephone helplines and SMS messaging into their lists of services. SMS messages are used to promote HIV testing and HIV treatment adherence. These are designed to increase access to friendly and confidential HIV/AIDS information, referrals and counselling services. A number of programmes have introduced non-financial incentives as a way to increase engagement in sexual health services, such as using online videos of male celebrities and gay personalities promoting testing in their media campaigns.
Foster more public-private collaborations
Public-private collaborations are needed to help communication technologies make a greater impact on the HIV epidemic. Programme implementers and researchers should work more closely with website owners who already have content and social and sexual networking structures in place for MSM and the transgender community. Integrating into structures that already exist and have a wide, dedicated audience, can give HIV programmes a considerably larger, more sustainable reach.
Address structural issues of homophobia and transphobia
Homophobia and transphobia should be recognised as core factors in denying access to HIV services for MSM and the transgender community. Electronic media approaches can work round these barriers (e.g. ability to engage in online services anonymously, ability for users to connect with gay- and trans-friendly services virtually). Community members may not use their real names or may have multiple email and Facebook accounts, reflecting the multiple identities they may have.
More technology-based programmes for MSM and transgender people living with HIV.
Communication technology is being used to offer vital services for MSM and the transgender community living with HIV, addressing various aspects of prevention, care and treatment. For example, technologies that remind and encourage service users to take medication, attend health and other social service appointments, as well as tools to inform health providers of problems with adherence and missed appointments. Other technologies, such as apps, may be useful for mapping, tracking and advertising MSM and transgender-friendly health services.
More work should be focused on evaluating and scaling-up these interventions. Social networking approaches should also be expanded as these are efficient means of working with MSM and the transgender community living with HIV, creating virtual networks to help reduce feelings of isolation, encourage health-seeking behaviour, and engage individuals in advocacy efforts.
Need for technology-based interventions for organisations and health/social providers
In line with the increasing focus on Health Management Information Systems (HMIS) – particularly the use of new technologies to improve patient care – more work needs to focus on the development and testing of communication technology systems and strategies to support quality care for MSM and the transgender community.
Our recent poll of 176 people found that 79 per cent of respondents used portable devices while watching TV (known as dual-screening) and 52 per cent checked their phones every 30 minutes.
While digital lifestyles decrease sustained attention overall, it's only true in the long-term. Early adopters and heavy social media users front-load their attention and have more intermittent bursts of high attention. They're better at identifying what they want/don't want to engage with and need less to process and commit things to memory. Many of us can relate to the increasing inability to focus on tasks, being distracted by checking a phone or scrolling down a news feed.
Is the internet and social media our new form of protest?
Back in the 1980s people joined the legions of activists who lined the streets demanding an end to HIV/AIDS. They would meet late at night and plan their strategic moves. Today, have we become a community of lazy people, who have helped groom a new generation of 'we don't care enough'? Or has HIV activism just evolved?
"If all we have are online protests, how seriously will we be taken?"
Has online protesting superseded holding a sign on the street with hundreds (and in some instances, thousands) of others? If so, we may be doomed. I don't say this to diminish any of the hard work people and campaigns are doing online. But, the reality is, if all we have are online protests, how seriously will those who should be listening listen, or those who are being targeted, pay attention?
Activism starts with a small group
We are fortunate to have people who are making a difference via social channels, but their missions are much different to those of activists in history. I admire the courage of young people living with HIV or at risk form the virus who have joined the HIV/AIDS fight. Their hope for a better tomorrow is based on their belief in being part of the solution today.
Even if a cost-effective cure and vaccine were here now, we would still need the leadership of the next generation to end this epidemic. We must encourage them to take part in HIV activism.
Projects geared to education and ending stigma around HIV
Positively UK, a leading HIV charity in London, has set up a peer-led initiative, run by people living with HIV for people living with HIV who are interested in activism and want to develop skills and build opportunities to influence decision making, and attitudes towards HIV. @Positively_UK
They aim to ensure that peer support is available in every UK health facility. They focus on developing a national network of peer support, addressing the needs of people who live with multiple conditions (diabetes, HCV & mental health) and petition commissioners to ensure funding for peer support services.
They want to produce an ambitious positive statement to challenge stigma by creating a world where people living with HIV have good health, respect and dignity. They have prioritised lobbying to change the sex and relationship education curriculum, to include issues around gender, homophobia, sexual rights and HIV and increasing the visibility and voice of people living with HIV.
The latest poll had a total of 176 respondents between 26 May and 22 June 2015, with data collected via online hosting at www.Design-Redefined.co.uk and social networking sites. Thank you to the community for their input into the poll and this article.
In response to the question, 'how often do you check you phone?' the findings put every 30 minutes as the most preferred choice (51.7 per cent), followed every hour (12.5 per cent) every 15 minutes (6.2 per cent) every 2-5 hours (6.2 per cent) every 6-11 hours (8 per cent) twice daily (4 per cent) and daily (11.3 per cent).
When asked 'do you use your mobile phone while watching TV?' 76.2 per cent said they did, followed by 13.1 per cent who responded 'sometimes' and 10.1 per cent 'never'.
The next poll examines Hepatitis C treatment as prevention. View the poll and vote here.
About the author:
David Rowlands is the director of Design-Redefined.co.uk, delivering effective healthcare communications to professionals and patients.
His key objective is to design, develop and deliver community projects to enable people living with, or affected by, HIV and/or Hepatitis C (HCV) to become better engaged with their treatment and care.
Working over a number of media platforms, across the public, private and third sector, he is able to establish a link to these sometimes hard-to-reach communities.
Read about the previous poll findings: