Duong, Vivian T
(2024)
Development and Evaluation of a Health Equity Workshop for Rare Disease Patients, Providers, and Advocates.
Master Essay, University of Pittsburgh.
Abstract
Rare diseases have become a significant global and public health concern. There are over 10,000 known rare diseases that cumulatively affect over 30 million people in the U.S., of which more than half are children, and over 300 million people around the world. Despite the collectively large number of them, many patients and families with rare diseases experience challenges to receiving a diagnosis and treatment due to structural barriers in health access and quality of care, which contribute to worse health outcomes for patients with rare diseases. To increase awareness for these barriers, I researched and developed a health equity workshop for rare disease patients, providers, and advocates, in collaboration with the E.WE Foundation, a rare disease advocacy organization dedicated to supporting patients and families with Trisomy 18 and other rare diseases. Through my meetings with the E.WE Foundation, we determined that their goal for the workshop is to educate participants on health equity and its significance to rare diseases, including factors that contribute to health disparities, through a one-hour long interactive workshop with activities and discussions.
I presented this workshop virtually via Zoom to a small live audience that consisted of members and friends of the E.WE Foundation and its partner organizations. Throughout the workshop, attendees were asked to respond to a total of four meeting polls via Menti, which were used to encourage interaction with the presentation. They were also asked to complete an online evaluation form via Jotform with their feedback at the end of the workshop. Responses were anonymously collected in a spreadsheet. Based on the evaluation data, the workshop resulted in an overall increase in knowledge of health equity and health equity for rare diseases after the workshop. All participants provided very positive feedback about the workshop, including its activities and discussions, and workshop presenter. Finally, all attendees rated the overall workshop very highly and reported that they would very likely recommend the workshop to a friend or colleague. Additional data on the workshop should be collected to improve future workshops and other resources for rare disease patients, providers, and advocates.
Share
| Citation/Export: |
|
| Social Networking: |
|
Details
| Item Type: |
Other Thesis, Dissertation, or Long Paper
(Master Essay)
|
| Status: |
Unpublished |
| Creators/Authors: |
|
| Contributors: |
| Contribution | Contributors Name | Email | Pitt Username | ORCID  |
|---|
| Committee Chair | Walmsley, Sheyenne | swalmsley@bwh.harvard.edu | UNSPECIFIED | UNSPECIFIED | | Committee Member | Durst, Andrea L | adurst@pitt.edu | adurst | UNSPECIFIED | | Committee Member | Edwards, Sarita | sarita@theewefoundation.org | UNSPECIFIED | UNSPECIFIED | | Committee Member | Polk, Deborah E | dpolk@pitt.edu | dpolk | UNSPECIFIED |
|
| Date: |
17 May 2024 |
| Date Type: |
Completion |
| Submission Date: |
30 April 2024 |
| Access Restriction: |
2 year -- Restrict access to University of Pittsburgh for a period of 2 years. |
| Number of Pages: |
68 |
| Institution: |
University of Pittsburgh |
| Schools and Programs: |
School of Public Health > Public Health Genetics |
| Degree: |
MPH - Master of Public Health |
| Thesis Type: |
Master Essay |
| Refereed: |
Yes |
| Uncontrolled Keywords: |
health, public health, health equity, health disparities, social determinants of health, rare diseases, genetics, continuing education, education, workshop, advocacy |
| Date Deposited: |
17 May 2024 21:20 |
| Last Modified: |
17 May 2024 21:20 |
| URI: |
http://d-scholarship.pitt.edu/id/eprint/46363 |
Metrics
Monthly Views for the past 3 years
Plum Analytics
Actions (login required)
 |
View Item |
![[img]](https://d-scholarship.pitt.edu/style/images/fileicons/application_pdf.png)
![[feed]](/images/feed-icon-32x32.png){kind=icon}