Online privacy concerns limit the reach of sexual health messages on social media

The way in which individuals manage their identities on Facebook, for example avoiding publication of material which could be seen as revealing something about their sexual behaviour or HIV status, limits the potential of online campaigns like It Starts With Me to reach wide and new audiences, according to a study published online ahead of print in Sexual Health. Those people most exposed to such campaigns are likely to be people who already believe in the social norms that the campaign promotes, the researchers say.

“Nearly all of our participants held concerns about privacy relating to their social media use and their engagement with sexual health interventions,” the researchers say. The researchers did not ask direct questions about privacy but it emerged spontaneously as an important theme in interviews.

The data come from a qualitative evaluation of HIV Prevention England’s health promotion programme It Starts With Me. The programme, which began in 2013 and is ongoing, targets gay men and African people living in England with messages promoting HIV testing and increased condom use. As well as advertising and face-to-face outreach, the programme includes social media interventions.



Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

acute infection

The very first few weeks of infection, until the body has created antibodies against the infection. During acute HIV infection, HIV is highly infectious because the virus is multiplying at a very rapid rate. The symptoms of acute HIV infection can include fever, rash, chills, headache, fatigue, nausea, diarrhoea, sore throat, night sweats, appetite loss, mouth ulcers, swollen lymph nodes, muscle and joint aches – all of them symptoms of an acute inflammation (immune reaction).


Qualitative research is used to explore and understand people’s beliefs, experiences, attitudes or behaviours. It asks questions about how and why. Qualitative research might ask questions about why people find it hard to use HIV prevention methods. It wouldn’t ask how many people use them or collect data in the form of numbers. Qualitative research methods include interviews, focus groups and participant observation.

Users are encouraged to share, ‘like’ and comment on Facebook posts. These actions are important for increasing the number of people who see posts and for building a network of individuals engaged with the campaign.

Indeed, data on this kind of engagement are often cited by HIV Prevention England to demonstrate the campaign’s reach. Currently the two It Starts With Me Facebook pages are ‘liked’ by almost 34,000 people. In a three-month period last year there were around 250,000 engagements (clicks, likes, shares) with paid-for content produced by the campaign across a range of digital platforms. In the last twelve months, there have been around 75,000 engagements with posts on the campaign’s Facebook pages.

Although those figures are impressive, they don’t tell us more about who is engaging with the material and how they do so.

Sensitive material

In late 2014, 40 people were interviewed. The first 20 were recruited through the online social networks of gay and African voluntary sector organisations; these interviews focused on how interviewees generally engaged with health information on social media. The next 20 respondents were recruited via the Facebook and Twitter accounts associated with It Starts With Me; these interviews also covered the respondents’ engagement with the campaign.

Of the 40 participants, 29 were men who have sex with men and 13 were African. Two men identified with both groups. The majority of the African participants were female.

The interviews showed that the It Starts With Me campaign “was effective in speaking to deeply held norms surrounding responsibility, HIV and sexual health,” especially among gay men. This man felt it was important for him to engage with HIV issues and he frequently shared campaign posts:

“Ive got people who I went to school with who will make a flippant statement about someone having AIDS or someone doing this and Im just like, I kind of think its my duty to educate and make people more aware.

However, this kind of behaviour would be problematic for many interviewees. Individuals interacted with a wide variety of people on social media (friends with different interests and from different parts of their lives, family, work colleagues, etc.) and it could be difficult to manage the varied expectations of these different ‘audiences’.

Interviewees felt that some information might be appropriate to share with some people they knew, but not everyone. They worried about how engagement with sexual health content on social media would be perceived by others.

This concern was most acute for those who were not open about their sexual orientation. This African man was afraid of homophobic reactions:

Theres still a lot of stigma around issues regarding HIV and also a lot of people know about people being gay. If I start liking things, gay and HIV, therell be a lot of questions being raised.

Another man feared what his social media activity might reveal about his HIV status. On Facebook he had ‘liked’ two HIV charities but did not want to go further:

“Ive liked those. But I dont like too many of the organisations, because I dont want too many people to know that Ive got it. Obviously its not something that I go around telling people at all.

One man said that after he shared a petition about access to pre-exposure prophylaxis (PrEP), contacts had asked him if he had HIV. Several interviewees indicated that material about testing and prevention for HIV-negative people had this potential.

In order to manage these issues, some respondents only shared posts in a targeted manner to people who they assumed would find the material useful. This allowed them to maintain divides between different spheres of their lives. This bisexual man said that he was not ‘out’ to all his Facebook friends:

“[Say] this report is about the Facebook campaign, it’s about HIV, and I know a few people who have got HIV. And instead of putting it out to the fourteen hundred, I would just put it on these people, on their walls.”

An African woman was generally interested in medical advances and felt able to share information about the medical aspects of HIV. However, taboos about the open discussion of sexuality in African communities limited her comfort in sharing information on sexual issues.

Respondents often found the privacy controls on Facebook confusing and were not confident that they could control who saw what. There was also some concern about the technical competence of health organisations to manage privacy concerns.

Someone posted something to [an organisation’s] Facebook wall as a question of something. [The organisation] answered it, but they also shared it as a public post. That person flipped out, because they werent necessarily out to everyone.


The data suggest that engaging with sexual health content is threatening to the way in which many people in the target audiences establish and maintain their online identities.

“These [privacy and safety] concerns limited the organic reach of the intervention by confining the intervention to those who already held the norms diffused through it, and by discouraging participants from sharing and commenting on content,” the researchers say. In particular, this created a barrier to engaging members of minority, marginalised or otherwise ‘hard-to-reach’ communities with sensitive topics.

The researchers suggest that ‘gated’ or ‘closed’ social media groups might allow more engagement of people with concerns about privacy, by providing a boundaried and moderated space. They may be more conducive to people engaging in deeper, more supportive conversations.