Federal agencies in the United States spend millions of dollars each year helping people address mental- and physical-health issues. However, only a few such initiatives are actually used in the real world.
Their uptake may be limited because many scientists do not include people with mental health conditions as equal participants of shared decision-making authority during program development and implementation. Co-productive interventions with community members who have direct experience with mental-health issues can help prevent program manuals from gathering dust on bookshelves—and to put them into practice.
From 2015 to 2018, during my postdoctoral fellowship at Dartmouth College in Hanover, New Hampshire, I partnered with people with mental-health conditions to develop a digital intervention called PeerTech. PeerTECH was designed to teach people with such conditions how to address issues related to their mental and physical well-being.
The program includes modules that are designed to be reviewed on a tablet by a peer-support specialist and a person with a mental-health problem. A specialist is someone who has direct experience with a mental-health condition and has been trained and certified to provide paid support. A smartphone application was designed to complement the in-person session.
Community members provided input at every stage of technology development in our project – from concept and program development, to study design and implementation. I worked with him as part of our co-production team, and we applied the scientific method to develop and study the Pirtek intervention.
Our team conducted a pilot study and found that Pirtek could potentially be delivered to the public. We also found promising evidence that its use was associated with reduced psychological symptoms and increased development of self-management skills, hope, empowerment, quality of life, and social support. We have developed a framework for community engagement with vulnerable populations that can be used as a guide.
Thanks to the strength of this work, in 2018, I was invited to join the faculty of the Geisel School of Medicine at Dartmouth College as an assistant professor.
So far, our co-production team has published six peer-reviewed articles, and we have been awarded funding from several organizations, including the 2019 Early-Career Investigator Award from the US National Institute of Mental Health and the 2017 Early- Includes Career Investigator Award. From the Brain and Behavior Foundation in New York City to research in Boston and Worcester in Massachusetts.
Here’s what I would advise current and future academics and universities to take away from my experiences:
Decide on a community-engagement model
There are various models of community engagement that can be used to guide your research, including proactive ones, in which both community members and scientists share decision-making authority and equal ownership of the product developed. In this model, members of the community are involved in defining the problem to be addressed, and the community is actively engaged with the scientific team on all aspects of the study.
There are also less active models of community engagement, such as advisory boards, in which scientists survey the needs and opinions of community members and use the results to inform their research direction.
It was helpful for me to learn about all the methods of community engagement before starting the study. By doing this, I had a model that guided me in the design and conduct of the PeerTech study.
I found the Centers for Disease Control and Prevention’s comprehensive guide to learning about different community-engagement models helpful.
Develop good relationships
Relationships have to be authentic – people can tell if they aren’t. Some work in scientific disciplines – such as social work, anthropology and marketing science – that include formal training in relationship building and community engagement as part of their code of ethical conduct in research. Scientists from other fields often have to train in these areas.
At the beginning of my co-production journey, I struggled to develop relationships with members of the community I was studying, even though I had received training in community engagement. Books on relationship-building techniques that I read during my social-work education, including Lawrence Shulman’s The Skills of Helping Individuals, Families, Groups and Communities (2008) and Irwin Yalom’s The Gift of Therapy: An Open Letter to a New generation included.
Therapists and Their Patients (2017), offer several suggestions, including “listen more than you talk”, “mirror others’ body language” and “look people in the eye”. But when I personally tried to apply these techniques during conversations with community members, it felt artificial.