Medication adherence for HIV+ youth

The Gist

Nokia’s annual Innovation Summit in 2008 focused on the use of mobile technology to enhance adherence to HIV/AIDS medications. I was on a small design team at Nokia who was approached by Nokia Corporate and Relations and Responsibility (the group who organized the summit) in early 2009 to help with some ideas they had around creating mobile reminders for HIV+ youth. Our design team ultimately challenged the assumption that a mobile reminder was the best solution for the problem, and designed a service that drew heavily from research we conducted with HIV+ youth, health workers, and those involved in the field. We worked with developers from Nokia’s Institute of Technology (INDT) in Brazil to bring our concept to life, and the project was piloted in Brazil in 2010 with great success.

The Process

Learning about HIV

Our aim was to improve medication adherence for HIV+ youth. This meant we had to get familiarized with the subject. We did extensive background research, scouring every resource we could find on HIV/AIDS. We talked to various health professionals at hospitals around San Francisco. Through this research, we found that medication adherence is extremely important for those who are HIV+. If medications are taken as directed, people with HIV can live long and healthy lives. Missing doses, however, not only reduces the effects of the treatment, but also leads to the increased chance of resistance to the medication.

Starting to map aspects of an HIV+ youth's journey

We were originally asked to create some sort of mobile reminder system, like an alarm, to help HIV+ youth remember to take their medication. We quickly got ourselves immersed in the field and arranged many in-depth interviews with HIV+ youth to put ourselves in their shoes. We talked to many different types of people; some who took their medication religiously, others who were on and off meds, and some who were still in denial about having HIV. After doing this research, it was clear that simply ‘forgetting’ to take their medication was not the main issue. After synthesizing our research, we realized there were many factors to why HIV+ youth were not taking their medication. All of these factors boiled down to one main issue: motivation. Factors such as not having support from friends and family, to rebelling against people forcing them to take medication, to simply being in denial about even having HIV… these all play a role in demotivating HIV+ youth. Those who were motivated never missed a dose. As one of our highly motivated research participants reflected: “even when I’m drunk, I’ll remember to take my meds”!

Taking your meds... it's not just about remembering to take them.

Armed with this, we started asking ourselves a new question: how can we motivate HIV+ youth to be healthy (both mentally and physically), which in turn would help them be more adherent with their medications?

We spent several weeks sketching concepts to address a variety of issues. We brought these back to some of the awesome HIV+ youth we talked to earlier. They helped us sort out what worked and what didn’t, and offered insights to make our concepts even better. During this time, we also brought in two developers from INDT for a week to be involved in this concepting process. This not only helped them get a sense of what they would be building later on, but it got them involved and excited about the solution too.

The Solution

In the end, we developed a mobile service with multiple touchpoints. Unfortunately, I can’t share the solution publicly yet, but rest assured that it has gotten rave reviews from the HIV+ youth we spoke to, and also from all the test groups that used it in a pilot study in Brazil! We’ve also received many comments from folks outside of Nokia who were involved with the project that our solution isn’t just applicable for those with HIV+, but for many other areas where motivation plays a huge factor (e.g., diabetes, alcoholism, etc).