Description

Having a chronic or rare condition, especially as a young adult in a rural community, can be an isolating experience without a community of peers and resources. The nonprofit organization Generation Patient (formerly Health Advocacy Summit) connects young people ages 13-30 with a peer support community and resources to improve their quality of life. One program is the Crohn's and Colitis Young Adults Network (CCYAN), which facilitates an international fellowship program for young adults with inflammatory bowel diseases.

Services offered

Generation Patient facilitates events, programs, and virtual meetings for young people with chronic and rare conditions. Currently, the organization offers about six virtual meetings per month in addition to various resources about higher education and civic engagement. In addition, Generation Patient facilitates an annual Virtual International Summit for all young adults with chronic and rare conditions. The 2021 Virtual Summit took place August 7-8, 2021.

Prior to the pandemic, the organization mostly provided free one-day conferences with four discussion-based sessions led by invited speakers such as activists, healthcare lobbyists, medical professionals, vocational rehabilitation counselors, and social workers.

The advocacy events focus on these areas:

• Advocacy skills: Attendees listen to activists and other change-makers.
• Education: Attendees learn tips on how to live with their condition.
• Support: Attendees build a community of peers.
• Resources: Generation Patient provides connections and resources as young people transition and transfer into adulthood with their chronic condition. One such resource is a college transition guide.

Here is a video about the 2019 summit in Indiana:

Results

According to survey results, some attendees said that one of the in-person summits was the first time they were able to openly talk with many strangers about their condition. Most attendees said that they were able to connect with their peers and learn new ways to advocate for themselves. For example, at the summit, some attendees learned about Section 504 plans for accommodations in school.

Generation Patient reported that it was one of the first advocacy interventions for young adults with chronic conditions in south Texas. Program coordinators estimated that about 20 attendees of in-person programming were rural.

The organization and its CCYAN program have facilitated roughly 92 meetings from March 2020 to June 2021. The Virtual International Summit brought together 300 young people with chronic and rare conditions from around the world for 10 hours with over 24 speakers. The CCYAN alone produced over 100 articles in 2020 and is on track to produce another 100 in 2021.

Generation Patient founder Sneha Dave participated in a panel whose work was featured in the 2020 book Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. In addition, the organization has presented at numerous conferences, including:

• Harvard Young Adults with Chronic Conditions CME
• Stanford Medicine X
• Healthcare Transition Research Consortium
• National Academies of Medicine

Challenges

Traveling to in-person summits can be difficult for rural attendees, so program coordinators offer travel reimbursement. Generation Patient is also piloting a stipend program in south Texas to reimburse those taking time off work to attend a summit.

The pandemic created major challenges due to the majority of the Generation Patient demographic served being classified as high-risk for COVID-19. All programming switched to virtual, however, which allowed more access to communities where the organization was not previously located.

Replication

Connect with local schools, social services, hospitals, and religious organizations, which can provide resources and help tailor the summit to best fit the needs of the area. Generation Patient has a comprehensive orientation guide for communities to create a summit in their area.

Contact Information

Sneha Dave, Executive Director
Generation Patient
sneha@generationpatient.org