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Designing a Better Peer-Support Experience for Patients, Caregivers, and Survivors

Opinion
Article

The process of building digital peer support experiences requires taking in feedback from users and their caregivers to address risk concerns, add new features and continuously improve the user experience.

© Angelov   stock.adobe.com

© Angelov stock.adobe.com

One of the most important nonmedical supports for people who are diagnosed with a life-changing and/or chronic disease is connection with others in the same situation. Family members and close friends who find themselves stepping into caregiving roles can also benefit from peer support. A look at the numbers shows that there’s a widespread need for this kind of social connection. Nearly 2 million people in the U.S. get a cancer diagnosis each year in addition to the 17 million people living with cancer and approximately 2.8 million individuals actively provide informal care for an adult with cancer.

However, peer support for people affected by serious diseases isn’t always available or easy to access, especially for those who want or need to connect digitally, as well as in person, with their support networks. Barriers include a lack of capacity among healthcare providers to develop this kind of support. For example, the process of collecting, sorting, and connecting patients and families manually can be too time-consuming for many providers to undertake. In addition, HIPAA regulations govern providers’ sharing of medical information, creating a compliance requirement for institution-led support groups.

Isa Velarde, an associate design director at Frog, part of Capgemini Invent

Isa Velarde, an associate design director at Frog, part of Capgemini Invent

Well-designed digital peer support allows patients to bypass these barriers by establishing the connections themselves and choosing what information to share, rather than depending on a care provider to make those connections for them manually and one at a time. It also has the potential to improve peer support access to traditionally marginalized patient groups. One study of African American breast cancer survivors found that peer support led to “more capacity to process breast cancer-related stress and improved quality of life” for those survivors.

Unifying and improving a fragmented peer support system

Peer support has evolved organically over time, traditionally organized by care providers and nonprofits. There are hurdles to facilitating these connections, including obtaining permission from participants, scheduling, locating meeting spaces and more. In addition, not all people who need peer support are comfortable with or medically able to attend face-to-face meetings. So, while local in-person groups are a valuable resource, they have a relatively small reach.

Social media would seem to provide a complementary solution because of its wide reach and sharing capabilities. The openness of social media makes it challenging, however, to verify participants’ identities, privacy compliance, and the accuracy of medical information and advice that participants share. One study involving 45 interviews with young adult cancer patients found that these patients “often haphazardly find online support” but “social media connections are not one-size-fits-all.” Trying to vet social media support groups and the information they provide can take more time and energy than most patients and caregivers have to spare, because they’re also dealing with illness, multiple medical appointments and lifestyle changes.

Understanding the peer support user experience

Designing digital peer-to-peer support experiences for these users requires deep insight into the existing support landscape as well as the particular needs of three user groups: patients, caregivers, and survivors. For example, a systematic review of existing research found a positive association between peer support for cancer patients that provides information and “emotional relief” and the psychological empowerment of those patients.

Chritina Merrill, founer and CEO, Bone Marrow & Cancer Foundation

Chritina Merrill, founer and CEO, Bone Marrow & Cancer Foundation

There’s relatively little scholarship to draw on to guide the digital peer support design process. As South Korean design researchers studying senior peer support noted in 2021, “few studies have explored peer-support design, and they are limited in number and scope, consisting mainly of guidelines, case studies, and toolkits.” In their article, they described using a co-design framework that involved seniors in the planning process and “effectively supported the identification of relational problems and the conception of interventions at both the group and interpersonal levels.”

One organization took a unique approach to designing this kind of experience, starting with research, interviews, listening, and a peeling away of assumptions about what patient and caregiver populations want in terms of support. The Bone Marrow & Cancer Foundation (BMCF), based in New York and founded by co-author Christina Merrill, wanted to create a highly customizable digital support experience for cancer patients, caregivers, and survivors in a dating-app inspired format that allows users to search for the kinds of connections they want. A series of interviews during the design phase of their CancerBuddy app revealed that while many patients, caregivers and survivors were motivated to seek support, the fear of judgment and stigma made some people hesitant to reach out. They also wanted to engage at the level that felt right for them based on their personality type, information needs, and available time and energy.

Peer support experience design must also include ways to manage risks. While some risks, like data privacy and compliance, apply to any support group in the health care space, other risks may be specific to the peer group. For example, clinicians in Australian critical-care focus groups wanted to ensure the mental well-being of participants by providing a facilitator trained in group discussions of trauma—something that survivors and loved ones also wanted.

Refining and redefining peer support

The process of envisioning, researching, and building digital peer support experiences also requires taking in feedback from users and their caregivers to address risk concerns, add new features, and continuously improve the user experience. By identifying the gaps in existing peer support experiences and seeking to understand the specific peer support needs of patients, caregivers, and survivors, designers can create a new kind of digital platform that replicates, builds on, and complements the emotional and practical benefits of traditional peer support groups for people affected by serious and life-changing diseases.

Isa Velarde is an associate design director at Frog, part of Capgemini Invent. Christina Merrill is the founder and CEO of the Bone Marrow & Cancer Foundation.

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