Co-Designing Digital Health Tools with Peer Researchers

Digital health, also known as e-health, m-health, or in the mental health field, as e-mental health, is the use of the internet and related technologies to deliver health services and information. E-mental health includes web-based tools, mobile apps, social media supports, specialized robots, and more.

As a person with lived experience of mental health issues and an enthusiastic user of e-mental health products, I applied to Canada Health Infoway’s Engaged Patient Challenge and was one of five winners who were chosen to attend the 2016 Infoway Partnership Conference in Toronto, all expenses paid. Canada Health Infoway is an organization that promotes the development and adoption of e-health, and they recognize the value of patient engagement and wanted us to be a part of their gathering. After all, if end users don’t support e-health products, they’re a waste of money.

At the conference, I saw many interesting and inspiring presentations, including from patients who talked about their user experience with things like electronic health records. While not a mental health conference, there was a presence from the Mental Health Commission of Canada (who had previously released an e-mental health briefing paper), including a panel presentation with speakers who talked about the benefits of online CBT, and a (private) peer support forum called the Big White Wall.

There were ample opportunities for networking, so I met peers, service providers, policymakers, and tech developers at the conference. My question for many of them was simple and repeated: Where are the opportunities for collaboration and co-design of e-health products? Sadly, while everyone agreed that e-health is better with end user co-design in collaborations that run the full gamut from conception to product testing, nobody shared tangible solutions for matching patients with developers to create and improve products.

CREST.BD, on the other hand, has always worked within a collaborative framework of community-based participatory research, and knows the benefits of working with peer researchers to create e-mental health tools. Through these collaborations they’ve successfully launched the Bipolar Quality of Life Tool, and the Bipolar Wellness Centre.

The Bipolar Quality of Life Tool is a self-management aid that assesses functioning in 14 domains of life from mood to sleep to workplace, and more. After an end user answers scientifically validated questionnaires, a graph is generated that shows which areas are doing well and which could use attention. From there, to follow up on a domain to improve, users are linked to the Bipolar Wellness Centre, which offers a wealth of tips, resources, and videos to help manage life in the domains chosen to focus on. After using the resources, users can go back to the Quality of Life Tool and re-test to see improvements and areas that still need work.

As someone living well with bipolar but still has ups and downs and issues to cope with, both of these e-mental health tools are a boon to help me manage my condition. It’s easy to see that these digital health products are infused with wisdom from lived experience thanks to the peer researchers who worked on them, and they provide tips and insights that I can’t easily find elsewhere. I always enjoy visiting the wellness centre, which is kept up to date with new information and resources recommended by peer researchers, clinicians, and academics, as well as the wider bipolar community.

The success of CREST.BD’s digital health tools relies on true collaboration and co-design with peer researchers, and CREST.BD sets a standard other developers can look to as an excellent model to emulate.

Sandra Kiume Dawson is a Peer Researcher with CREST.BD, manages the e-mental health directory Unsuicide Online Suicide Help, and maintains the Twitter account @unsuicide.