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Health Advocacy Summit

Summary 
  • Need: To help young adults with chronic or rare conditions access health and educational resources and build a community of peers and advocates.
  • Intervention: Health Advocacy Summits bring together young adults, medical professionals, patient advocates, and others for a free one-day conference. HAS also facilitates programming such as the Crohn's and Colitis Young Adults Network.
  • Results: HAS currently has summits in six states. HAS reported that it was one of the first advocacy interventions for young adults with chronic conditions in south Texas.

Description

Health Advocacy SummitHaving a chronic or rare condition, especially as a young adult in a rural community, can be an isolating experience if people don't have a community of peers or aren't connected to resources. Health Advocacy Summit (HAS), a nonprofit organization, helps those aged 13-30 connect with others and access resources to improve their quality of life. One HAS program is the Crohn's and Colitis Young Adults Network (CCYAN), which facilitates an international fellowship program for young adults with inflammatory bowel diseases.

HAS partners with the following:

  • Global Genes RARE Foundation Alliance
  • United Ostomy Association of America
  • American College Health Association
  • Scleroderma Foundation
  • Invisible Disabilities Association
  • ReelAbilities Film Festival
  • Inspire, a social network for patients and caregivers
  • Chronic Disease Coalition
  • Patients For Affordable Drugs

Services offered

HAS provides 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: HAS provides connections and resources as young adults transition and transfer into adulthood with their chronic illness. One such resource is a college transition guide.

Here is a video about the 2019 HAS event in Indiana:

Results

According to survey results, some attendees said that this summit 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.

HAS 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 were rural.

Indiana Health Advocacy Summit attendees

Challenges

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

HAS South Texas summit session
An attendee of the South Texas Health Advocacy Summit shares her experiences during a discussion about navigating the workplace with a chronic illness.

Program coordinators are also looking into filming and broadcasting summits. Due to the COVID-19 pandemic, HAS will be facilitating a no-cost virtual international summit, connecting young adults with chronic illnesses from various geographic locations.

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. Health Advocacy Summit has a comprehensive orientation guide for communities to create a summit in their area.

From left: co-pilot director Itzel Hernandez, executive director Sneha Dave, a HAS speaker, and co-pilot director Ricardo Rendon at the south Texas Health Advocacy Summit

Contact Information

Sneha Dave, Executive Director
Health Advocacy Summit
sneha@healthadvocacysummit.org

Topics
Children and youth
Chronic disease management
Community engagement and volunteerism
Networking and collaboration

States served
Indiana, Texas

Date added
May 17, 2019

Date updated or reviewed
June 9, 2020

Suggested citation: Rural Health Information Hub, 2020. Health Advocacy Summit [online]. Rural Health Information Hub. Available at: https://www.ruralhealthinfo.org/project-examples/1058 [Accessed 3 December 2020]


Please contact the models and innovations contact directly for the most complete and current information about this program. Summaries of models and innovations are provided by RHIhub for your convenience. The programs described are not endorsed by RHIhub or by the Federal Office of Rural Health Policy. Each rural community should consider whether a particular project or approach is a good match for their community’s needs and capacity. While it is sometimes possible to adapt program components to match your resources, keep in mind that changes to the program design may impact results.