How to do user research when your user is a heroin addict

Where do we find some heroin addicts to speak to? This was the question that my team and I were faced with when building an opioid treatment program. The answer to that question turned out to be surprising.

As a bit of background here, I’ve spent the last 3 years working with my team to build digital-first treatment programs for substance addiction — namely for people addicted to tobacco, alcohol and opioids (including heroin). Our treatment programs bring together digital (mobile apps, clinician tools, connected devices); human (clinicians, counsellors, coaches, care coordinators); and physical (medication, lab testing) elements of care to help people manage and hopefully overcome their substance use.

Conventional wisdom in product development says, that if you’re building a product to solve a problem for someone, then you need to define who that someone is, find them and speak to them. A lot of them. Speaking to them should be among the most important things you do. Only by building a product grounded in deep empathy with the people your building it for are you going to do a good job of it.

That was pretty straightforward when I worked at eBay. Need to speak to someone who shops online? Speak to literally anyone. There were multiple occasions where we were literally able to walk out of the office and grab people on the street to help us get some insight on a topic. But understandably, that wouldn’t go down so well in the context of substance addiction. So where to find people?

I’m willing to bet that right now you might be picturing a bridge in the sketchy part of town; or the alley that you always avoid on your walk home. That’s where my mind went for a while. But actually, I want to dispel some myths for you. Until I worked in this space I had no real idea that there was such a thing as a ‘high-functioning heroin addict’. What I’ve learnt since is that 80% of US heroin addicts started with an opioid prescription from their doctor. That most of them (over 70%) continue to hold down jobs. And that those jobs can be very successful ones — I remember speaking to a guy with a top job at a public tech company who told me he’d been an IV heroin user for 7 years (and was still using at the time).

So the stereotypes you conjure up in your mind do exist, but they’re actually not the majority of people affected. With that insight, we were eventually able to find some really successful approaches to finding people to speak to:

• Reddit — Reddit is amazing. There are communities for everything on Reddit. Not just for general addiction, but subcommunities for specific treatment types, medications, demographics etc. Through the power of trial and error, we learnt what a great job the community moderators do of protecting those communities and keeping the content relevant. What eventually proved successful was reaching out to the moderators directly via private messages to explain who we were and what we were trying to do in order to get their approval to post about our user research in the community and to recruit people to do Zoom calls with us.
• Partnering with clinical research — alongside the product-led research, we also have a wonderful team focused on clinical research — understanding the latest science, running clinical trials and publishing papers. For a time, our Product Development and Clinical Research teams were operating in a way that was too siloed from each other — often doing research that overlapped without collaborating effectively. Identifying that gap and then joining forces on research proved to be a really powerful approach. Not only was it more efficient and collaborative, but it allowed us to turn our user research into a clinical study (that may eventually be published), which then meant we could partner with more healthcare institutions to speak to their patients.

Both of these approaches combined gave us a very broad cross-section of people to do interviews with. All done via Zoom. The no-show rate was probably a bit higher when compared to past products I’ve worked on, and there were some unique challenges — from the distracting e.g. when a guy had a noisy chicken in the background; to the more serious — when we realised the woman we were speaking to was a clear suicide risk (we managed to get her onto a call with a trained Counselor to take over). But I’m consistently amazed by how generous people are with their time and their stories and their desire to help others going through similar challenges.

By now, I must’ve spent more than a hundred hours interviewing people. It’s been insightful, it’s been intense, but most of all it’s been rewarding. I don’t think I could put it any better than Pamela, one of our participants in alcohol research, (who sent me the letter in the image below) when she said, ‘It’s the most important research you will ever do.’

Thank you to all of our research participants.