What is Peer Support?

Peer support is a process where individuals with shared experiences facing similar challenges come together to provide and receive emotional support [1]. Generation Patient’s peer-support meetings facilitate these supportive connections between young adult patients — i.e., young adults living with chronic medical conditions, such as Crohn's disease, lupus, Lyme disease, rheumatoid arthritis, and more.

Our peer support meetings are just one of many forms of peer support available for young adult patients, each serving different purposes. Other examples include more traditional in-person support groups, peer mentorship programs, camps, online social communities, and disability-affinity groups for university students [2]. Consequently, there is no universal "one size fits all" approach to peer support for all patients [3].

Generation Patient’s Approach

At Generation Patient, we see considerable value in young adult patients fully creating and leading these spaces. Our peer-support meetings are community-led, meaning that all of our facilitators are also young adult patients living with chronic medical conditions. We've found that peer-led groups, rather than provider-led groups traditionally found in a medical setting, can help increase patients’ comfort, willingness to share, and overall sense of connection. 

Since March 2020, Generation Patient has facilitated nearly 600 virtual peer-support meetings. Our main focus for these groups is support and solidarity with fellow young adult patients. We want to foster community and provide tools to navigate real-world challenges.

Our meetings address a variety of topics tailored to the needs of our community, such as medical disclosure, coping with unpredictability, navigating outside perceptions of chronic illness, medical trauma, and relationship and communication strategies. Alongside these topic-focused discussions, we also host more informal conversations, interactive workshops, games, and other activities. This mix of styles allows participants to forge deeper connections with their peers, who inherently understand the challenges of living with chronic illness even when it’s not explicitly being discussed.

Key Principles Behind Our Peer Support Meetings:

• Shared experience: Our peer-support spaces are built on the principle of shared experience and solidarity. This means that the individuals providing support are peers or near-peers—young adults who have lived experience with chronic medical conditions. Our community represents young adult patients across disease groups, and while their experiences may not be identical, there is a lot of common ground between our community members and an inherent understanding of the various challenges we face trying to navigate this critical life stage with a chronic illness.

• Community-led: Our peer-support groups are entirely community-led, meaning they are run by young adults living with chronic conditions, rather than medical providers. This approach addresses the power dynamics often present in provider-led groups, where patients may feel reluctant to share personal challenges due to concerns about judgment or fear of discussing negative experiences with the healthcare system. By ensuring that peers lead our groups, we create an environment where patients feel more comfortable and willing to share their personal stories. This not only enhances their sense of connection but also promotes a more open and supportive community.

• Validating the full spectrum of experiences: We recognize the importance of validating the full spectrum of experiences—both positive and negative—associated with living with a chronic illness. Our peer support groups provide a safe and open space for community members to discuss and acknowledge their diverse experiences, challenges, and strengths. This genuine validation helps participants feel seen and understood, empowering them to navigate real-world challenges more effectively.

• Safe, inclusive, and accessible: We encourage self-advocacy in this space and community care—we take care of ourselves and each other in our peer-support spaces! We strive to create an open dialogue around accessibility needs and encourage flexibility and creative solutions to meet the needs of our community.

Evaluation and Research

While research on the effectiveness of peer support is not extensive, the available studies indicate its positive impact [2, 4, 5]. Unfortunately, peer support is still underutilized in healthcare settings, and there is a further lack of research promoting its inclusion in the standardized long-term care plans for young adult patients with chronic conditions—a gap that, if addressed, could significantly bolster disease acceptance and reduce isolation for young adult patients across disease groups. We are currently working with researchers at Boston Children’s to evaluate the impact of our peer-support meetings.

To further address this gap, we created the Roundtable on Peer Support as an Intervention for Young Adult Patients. This roundtable explores the opportunities, barriers, existing data, and the pressing need for further patient-centered outcomes research and comparative effectiveness research related to peer support in the treatment of young adult patients. Over the course of two years, this roundtable will serve as a collaborative learning community comprising various stakeholders, including young adult patients, caregivers, medical professionals, and researchers. This roundtable is supported by the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). You can learn more about the details of our project here.