Research spotlight: #LifeAndLoveWithHIV | Digital Health Week 2019

#LifeAndLoveWithHIV is an online space for women living with HIV to reclaim their sexuality and shift the narrative from risk to pleasure. For Digital Health Week, we spoke to Drs. Angela Kaida and Allie Carter and writer Wynne ST about the project and what it’s like to navigate the world of digital health.

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Last year the #LifeAndLoveWithHIV team received a Michael Smith Foundation for Health Research Reach Award to launch a social media campaign. To date, the research team has recruited and supported twelve feature writers from around the world who have covered a diverse range of sexual health topics from the perspectives of women living with HIV, including stigma, orgasm, pleasure, dating, motherhood, and #UequalsU. The pieces have included a variety of personal narratives, short fiction, reflections of recent scientific findings, or advice created by and for other women.

Dr. Kaida explains that the use of a digital platform has enabled a type of ‘citizen science’ – a collaboration between scientists and community leaders to translate research into powerful personal stories and visuals that can resonate with people in meaningful way. Writers are paired with a mentor (either another woman living with HIV or a researcher) who helps with editing, style, and fact-checking where necessary to ensure that any sexual health information is evidence-based. Even more importantly, this is about community capacity building. The team meets regularly via Skype to debrief and support one another across continents. 

“Our project fits really nicely at the intersection of technology, online media, art, science, and community activism” adds Dr. Carter. “Sometimes there’s a lot of tension between all of those worlds, but when they align, it can also make for a really transformative project.”

“When we’re talking about positive sexuality and HIV together – those are just two topics that don’t get a lot of air-time from this positive perspective, and so having an online digital space to do it is disruptive… It allows that conversation to happen and come out from the shadows.”

Despite pressures on the research community to share their work with the public, and the support they had from their institution, the #LifeAndLoveWithHIV team faced a few unexpected structural obstacles in the lead-up to their launch. For instance, when a user visits the website, they’re greeted with a disclaimer entitled “Legal Information and Terms of Use” that a user must agree to in order to access site content.

“We are required to have this legal disclaimer stating that we can’t be held accountable for the health information on the site, that users shouldn’t consider the information as health guidance, and other similar statements. That surprised us, considering our explicit commitment to being evidence-based and because the internet is glutted with health and “wellness” websites which provide pretty shoddy and sometimes harmful health-related information that don’t have the same requirements. We couldn’t help but wonder if the double-standard was related to our focus on women, HIV, and positive sexuality,” says Dr. Kaida. 

“The larger message here is that when you’re pushing into new spaces, sometimes the infrastructure is actually not set up to know what to do about you.”

The process of digital storytelling has been transformative for the research team and for the writers. Wynne ST, one of the women recruited to write for #LifeAndLoveWithHIV, shared a powerful quote about how writing for the site helped her unpack some of her own fears about sharing her story:

My biggest fear about writing publicly about sexuality and relationships was what if people know I am not having sex… How do I write about sex if I am not having any? …Over time and several articles, I realized it was as valuable an insight as having sex all the time, and not nearly as uncommon as I thought.  Sexuality, identity, orientation, learning the language, building my courage, baring my soul, each article became another lesson about learning sexuality, whether or not I was having sex wasnt the biggest takeaway. There were scary moments, depending on the topic and article. But as each article was published, I became more confident – it didnt matter as much what people thought, it mattered how I felt about sharing.  The shame and self-consciousness became less and less, and I realized I had the support of a global community of women supporting me telling my story.

This global community is an important part of #LifeAndLoveWithHIV. Over the past year, the website has had more than 3,800 unique visitors of all ages from around the world, averaging over 500 visits per month. Visitors come from more than 50 cities, mostly in the USA, India, Canada, the UK, Pakistan, Kenya, Australia, South Africa, Germany, and Nigeria.

But, with visibility comes risk. The team spends a lot of time considering the ethics around their work, especially how to mitigate harms. Some women choose to use their real name and photo, others write anonymously and use a graphic to represent themselves. 

The team regularly engages women in reflexive discussions about why they want to share their story, what risks are involved, and whether their feelings on making a piece publicly accessible might change in the future. They also worked together with writers to develop care guidelines to help navigate some of these issues, as well as to guide writers on ways they can support each other. 

Everyone on the team signs a contract, which includes agreements about privacy, confidentiality, and releasing articles to the public. Participation is 100% voluntary and writers can remove an article at any time. 

“We all know the internet can be an ugly place, especially for women. When our writers bravely choose to share their truths on our public platform, they can become targets of trolls who think people care what they have to say” says Dr. Kaida. “We continue to revisit and update our guidelines to protect the writers so that we can continue holding space online to talk about difficult and necessary topics.”

 “So far, we haven’t had any problems… we haven’t had any instances of cyberbullying or anything like that. We also haven’t gone viral yet,” Dr. Carter points out. “I think that the more people you reach the more risk that you could open yourself up to critical views. But, so far it’s been a really positive experience for everyone involved.”

Follow the #LifeAndLoveWithHIV social media campaign on Twitter, Facebook and Instagram, or visit their website, www.lifeandlovewithhiv.ca  to learn more.