The world has seen technology take a prominent role during the pandemic by allowing us to connect through virtual means. What are some cautions that you wish the field understood better related to providing peer support virtually to adults with mental or substance use disorders?
Technology—you can’t live with it; you can’t live without it. So, it’s important to educate yourself on its use. One of the cautions about technology is that it may not align with the values and principles of peer support, which could impact how peer support is delivered. For example, there could be a technology that uses passive monitoring (i.e., collecting data without the user actively sharing it). This raises concerns about the data that gets collected—it could potentially be used to monitor the audio in an individual’s home or track their GPS location, and that may not align with the values and principles of a peer support specialist or a person using the service. Therefore, it is important that peer support specialists and people engaging with services educate themselves on any technologies that might be adopted to facilitate services. Passive monitoring, machine learning, and digital phenotyping are all elements of different technologies that may not be compatible with the peer’s or the service user’s individual values or with their expectations for their relationship with each other. When peers are educated on the details of these technologies, they can make an informed decision about whether or not to use them, and if they do, they understand the pros and any cons. If they recommend it for use with a person receiving services, they can make sure that individual understands too. Enabling informed consent and facilitating an understanding of the privacy statements are both essential in order to help individuals make the best decisions for themselves.
There are a lot of opportunities and drawbacks in using technology in peer support. For instance, we can automate peer support by using chatbots, allowing someone to visit a website or virtual reality interface and chat with a computer algorithm. But the human connection is a very important part of supporting people in recovery, and if using this technology cuts that connection out of the support process, the technology may not be aligned with the values and principles of peer support. I want to look at that specific question scientifically: do we dilute the human connection through technology? I hypothesize that we do. Based on all of our scientific research in this area, it seems that may be able to facilitate the human connection, but it can’t replace the human connection, and that’s something the field of peer support needs to keep in mind.
You have been instrumental in creating Digital Peer Support and a digital peer support certification. You also serve on the Expert Advisory Panel on Smartphone App Development for the American Psychiatric Association. What has propelled your interest and involvement in digital engagement and peer support?
My interest there lies in growing up with my father, Dave, who had multiple sclerosis and was in a wheelchair with limited mobility, eyesight, and capacity to move his arms; he also was impacted by cognitive impairments. Despite the prognosis, he thrived. I saw the impact of pharmacological treatment on his life and functioning, and then I saw how social support improved his quality of life even further.
Because of both his medical treatment and support services, like telephonic peer support, transportation assistance to get to the gym, and his electronic wheelchair, he lived a full, meaningful, and impactful life, one full of smiles and hugs. If you knew Dave, you know he had a hug calendar, in which he tracked each hug he received; at one point I think he was up to 900 straight days of hugs! The power of our support systems, bolstered by technology, changed his life and changed mine: the peer support specialist calling him every night, the transportation assistance driver that brought him to the Stratford Club so he could work out, and his wheelchair that helped him get those hugs. My father has since passed on. I hope to carry on his legacy by working with peer support specialists and combining their work with technology to increase access to their amazing work to support people in living full, meaningful lives—like my dad.
Tell us more about the digital peer support certification—why is it necessary, and how can it help peer support specialists in their work with justice-involved individuals experiencing mental or substance use disorders?
My colleague Mr. Rob Walker and I developed the certification based on seven years of scientific work we had been doing in digital peer support. It is a 12-hour live certification in digital peer support that includes didactic training over six consecutive weeks, for 2 hours each day. The certification covers topics including digital peer support competencies, access, and engagement of service users with technology, ethics, privacy, confidentiality, and delivering peer support through available technologies, with a focus on transparency and informed consent (digitalpeersupport.org).
The impetus for the development of the certificate was COVID-19. Rob and I had heard that a lot of organizations and businesses were closing, and we knew that there was a need for peer support now more than ever. So, we came together and developed the curriculum based on our research.
We offered it nationally to get it out there, and so people could keep their doors open. That was one of the great things about a digital format: you can come to this training, and the next day you are ready to keep operating. It is so incredibly practical. Since March 2020, 3,000 people worldwide have been trained as digital peer support specialists.
The benefit of the digital certificate is that it increases the competence of peer support specialists using various types of technology, from virtual reality video games to the telephone. We also show trainees how to coach others on getting access to technologies at no or low cost, and we teach them how to use the technologies—it’s very practical. For example, let’s say a peer specialist is working with an individual who recently reentered the community after a long incarceration. While that person was incarcerated, technology changed, but the peer support specialist can help the individual learn to use new technologies to support their reentry and overall quality of life. People reenter the community with varying levels of experience with technology, and peer support specialists know how to meet them where they are. The peer support specialists can train them to use technology to chat back and forth, to use videos, to connect, or to go online and get the health services that they need. And don’t forget the other social aspects, such as using something like Netflix and having fun with technology, which supports the individual’s whole health.
Many of us also seek ways to step away from technology from time to time. What strategies do you use to take a break from technology and foster meaningful connections in your downtime?
I love that question because as much as I integrate technology in my research and my life if you know me personally, you know that Karen doesn’t always use technology. I rarely even use Zoom—I prefer a good, old-fashioned telephone call. Technology is great, but we get to choose whether to engage with it. For example, last weekend, I told everyone I was going offline and then disengaged from my smartphone—no text, no telephone calls, no Facebooking. It was fabulous; I feel refreshed. I recommend that everyone try a technology detox and see how they feel before and after.
There are days I set aside for writing rather than interacting with technology, and that’s okay. I intentionally take space in my calendar when I don’t schedule any Zoom meetings or only take telephone call meetings. I also don’t have my email on my phone, so I don’t have constant notifications.
I like to go out into nature to disengage. There are many benefits to technology, but for me, it’s key to create a balance in my own life and choose when I want to engage or disengage. For example, my habits may look different if we are working on a grant submission.
Finally, you’ve embraced the role that the community and peers play in creating meaningful services or programs. What is one strategy our readers could consider for fostering community engagement in creating the resources that community members will later use?
One key strategy is being willing to give up your sense of expertise and accept that you are not the expert. It’s challenging, but it’s also incredibly rewarding. Because when you do this while partnering with the community, together you develop better programs, and you develop better services—and people use them! They don’t just sit on a shelf.
Another strategy is providing training on their role to everyone involved in a collaboration. When we work with community partners during our research, everyone gets training that will support a strong partnership. We train community partners in research, and we train scientists in community engagement. That way, everyone knows what to expect. At least 50 percent of our research team is composed of people that represent the community, which can include service users, caregivers, scientists, and policymakers with a lived experience. It takes 17 years to get something from conception to practice, and only 11 percent of those things get incorporated in a way that is sustainable. But when you integrate community-based participatory research or practices from the beginning, it takes way less time to get from conception to integration into practice. That makes it a promising strategy for getting our evidence-based practices out there.
Finally, another strategy is to integrate accountability tools. If you are going to engage in community-based participatory research, whether it is funded or not funded, encourage the integration of a tool that facilitates community feedback. The tool should prompt all community partners (members of the community, policymakers, research team members) to report their experiences. This information can be used to improve the process so everybody will gain from the project.
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