Designing an Experience around Disease and Stigma
A couple of months ago I was given the opportunity to undergo a mentored UX Design course from Springboard. I’ve been active in the local UX and HIV advocacies, but I thought going through this program would be a perfect chance to actually increase my confidence as a UX designer while creating something that had actual social impact.
I was lucky enough to be paired with the amazing Emily Waggoner, a UX designer for MIT who’s interests closely matched my own. Her work in transgender rights we’re a perfect match to my own advocacies.
The Philippine Situation
To better understand the problem, I needed to first understand the HIV situation in the Philippines and how it compares to the rest of the world.
The first Philippine case of HIV was reported in January 1984. Since then the Philippines has stayed a low-prevalence country in terms of global statistics — however, the infection rates continue to rise specially amongst the MSM. This trend runs opposite to the global trend where rates are decreasing and some predict that the emerging epidemic may soon jump onto the general public.
Before I could actually start designing solutions, it’s important to actually understand the social situation surrounding HIV. At this point, I decided to narrow down the questions to the experience of getting tested and the experience of those after getting tested and diagnosed. It was after making this analaysis that I thought it was important to focus onyoung adults in the Philippines as well as PLHIVs.
I started with a survey to get more quantitative data as a sneak peak into the psyche of our audience. An online survey was conducted with 104 participants. I also held in-depth interviews with individuals focusing on their experience getting tested and, for the PLHIVs, their experience about stigma and treatment.
Though the survey was quite short with a limited audience of 105 participants, interpolating the data showed amazing insights which most people never quite considered.
Majority of the male respondents in the survey identified themselves as gay, bisexual or queer — a target audience of many HIV awareness campaigns. Within this demographic, over half (61.3%) reported of subjecting themselves to voluntary counseling and testing (VCT). This may be attributed to the increasing movements related to HIV and STI education and management in the country.
However, the findings suggest that within the LGBT sector of the male respondents, a sizeable 38.7% have not accessed HIV testing facilities or services — not to mention very small heterosexual cohort (f=??) that also answered the online survey. The call to sustain and improve efforts towards making Testing and Treatment more accessible to both the key and general population must be maintained.
The data for women shows less promise than men. Of the women who answered the survey, 60% said they we’re single and of the single women, 52% of them admitted to being sexually active. With that in total only two women have admitted to ever taking an HIV test and 60% of them did not know where to get an HIV test.
To find more specific problems and details on testing and treatment, I interviewed 6 people from different backgrounds. The interviewees included Two sexually active women (both identifying as bisexual), one sexually inactive heterosexual man in a monogamous relationship, one sexually active bisexual man, and two Male PLHIVs (People who live with HIV).
From those interviewees who have have gotten an HIV test, the biggest hindrance is time and accessibility. Many have difficulty finding time between work and family time to actually get an HIV test. For these interviewees, the habit of getting tested regularly isn’t still ingrained.
A low hanging fruit does exist for women with majority of those interviews said it would have been a lot easier if it was packaged together during their yearly visits to their gynocologists. Though they can ask their doctors to help them with this anytime, most clinics and physicians don’t have facilities for this.
For those who have not gotten tested, majority do not understand the risks and do not see themselves at risk — this is especially true for the females. Majority do not understand the after-care process or the treatment that is involved. Many of the women also did not find any of the campaigns related to them at all.
Some interesting insights when it comes to testing, specially in the cases for the mass testing events we’re also brought up. Though they do reach their targets, some of their pain points show that they found getting tested at a per-hour motel that looked “shady” (as one of them coined it). Another has mentioned that though he understood why some of the groups tried to use humour while explaining HIV during pre-test counseling, it made the test feel less “legit” even saying that there was too much humour injected during the counseling. Many found the post test counseling a bit a bit shady as well as it was done in motel rooms.
As part of the interviews, I investigated the reactions of each participant on different HIV campaigns in and outside the country.
The first campaign poster was an old mass testing image spread throughout social media. Most reactions to this tended to focus on the image of the shirtless man and would take a while before they realize it was a drive for HIV testing. Even worse, most people could not even see where the testing would be held and there was no compelling reason for them to do so.
The second campaign that was shown was an old campaign for love yourself platinum, a project that allows for on-demand and by appointment private testing for those who are afraid to go to a testing hub or a mass testing event. Again, the same problems arose with most people being completely focused on the shirtless sexualized image instead of the information.
Another local campaign I exposed my participants to was the Savesexy campaign by RedWhistle. Though it succeeds in portraying a positive image of athletic beautiful people (infact many wanted to know more because of it’s usage of celebrity endorsers) — most couldn’t understand that it had any relation to spreading HIV awareness (and some even mistaking it for a lifeguard workshop or an advertisement for a clothing line). When the event and campaign was explained many reacted to the tagline as being vague asking “do I need to be sexy to be saved?”. A lack of contextualization was apparent in the advertisements and a lack of knowledge of the brand was apparent.
On the other end of the spectrum, many critics of the HIV response in the Philippines feel we should return to the use of fear images citing these two images as examples. The above image is the most famous image related to HIV during the 90s. While it does give respondents negative sentiments, one particular participant noted that he did want to get tested after seeing this image not because he feared becoming like the man dying but he didn’t want his family to go through the same emotions portrayed in the photo. This shows an interesting look at the Filipino psyche being a country that’s still very family oriented and the family can become a driving force in helping people get tested and stay in treatment.
Another image that I showed was from the french organization AIDES. While it succeeds in showing the message that it could happen to anyone, most people became more afraid of getting tested after seeing the above images.
The last image comes from the US CDC “Treatment works campaign”. Though the image is mostly aimed to keep PLHIV’s to get and stay into treatment many respondents reacted positively to this as it portrays a human face to HIV and that things can be done after a positive diagnoses.
Before even starting designing a solution I felt it would be good to focus the solution on a persona. Empathy maps helped a lot here to organise the data gathered from Interviews into personas that we’re reflective of the audience we wanted to reach.
Two personas eventually emerged, one male and one female. Though both had very similar intent and psyches, they approached and saw campaigns and getting tested very differently.
Ideating and User Stories
Because most of the research and analysis had been done and tangible artifacts we’re created. Ideating on solutions and features became much easier. Because I had a lot of ideas, organizing them into user stories helped focus them to user needs.
A large barrier to testing for participants is the lack of knowledge on where to get tested.
While small satellite testing centers and large hospitals/clinics both offered testing services, participants reported that the lack of information on the availability of these options proved to be a major barrier for them.
Addressing this problem meant creating a system that can map out all the available testing centers in Manila so that interested participants can choose based on geographic convenience. With this in mind, I designed a mockup that fulfilled this function, letting users search and identify the nearest testing and treatment hubs based on their proximity.
A couple of things I decided to add in that we’re not in the original plan included a blog or news portal that kept people updated on the state of HIV in the Philippines as well as if there were any events that we’re for the benefit of the HIV advocacy. A big part of this as well is finding content on the web to help curb stigma such as Prince Harry’s live testing video to help get traction.
In keeping with the plan and the needs of giving people the most accesible way to get tested, making sure we provide the operating hours of these testing and treatment hubs became really important.
Another aspect that couldn’t be done without was a general FAQ of HIV. This became important as most of my interviews still had misconceptions about the disease specially with the context of the Philippines. Most of the times with most education material in the country, little things become lost because of efforts to try and simplify the information. A card sort was done to make sure that information was easily understood but still complete.
Another more subjective barrier was the way that HIV awareness and testing was being advertised. A large majority of women felt most of the campaigns did not speak to them and we’re too sexualised and skewed to a male LGBT demographic — and considering current reports showing a rising rate of infection amongst pregnant women, I felt that this needed to be considered as well. We needed to communicate and educate young people about HIV in a non-sexualized, non-glamorised, informative and positive manner. Though I was not able to prototype any material for this campaign I would still love to actually bring this to fruition with the help of any of the existing HIV advocacies.
Limitations of the study
As with any study, there are limitations to the research I’ve put forward. The quantitative data was done only to provide a shallow dive and give guidance on where I could focus. As such, I focused right away on gender identity and did not take into consideration men who do not identify as either homosexual, bisexual or anywhere in the queer spectrum but have sex with men (it’s actually possible and the technical term is MSMs or Men who have sex with men).
Another limitation is that most of the interviewees came from the Metropolitan Manila area. Though this is a limitation, it shows that there are still spaces within the highly developed urban capital that are not being properly addressed by our local response to HIV.
Though these maybe existing limitations, the initial results and solutions do provide a framework of what we can do with further research.
After this project, I’ve began approaching and speaking with organizations such as Loveyourself and Redwhistle. Though my project is still in it’s early stages, the insights have been openly accepted by those in the advocacy.
Loveyourself for one has been steadily distancing their communications from their old highly sexualized past campaigns to be a more inclusive and have been using more human messaging.
As with anything related to design, creativity is important but it is even more important that we ground our creativity to the experiences of our audiences. We cannot simply assume but we need to learn to actively seek out what works and why things work with our users.