Office of Health Equity Research News
OHER Director Message: Sharing the Health Benefits of Peer Mentorship on a Global Stage
Friday, June 30, 2023
Earlier this month, I traveled to Milan to speak at a conference hosted by a prominent international organization focused on rheumatic diseases. The EULAR European Congress of Rheumatology is a global convening of doctors, healthcare professionals, scientists, patients with arthritis/rheumatism, and representatives from the pharmaceutical industry. The event is a forum for exchanging ideas and improving clinical care for people with rheumatic diseases. Each year, it attracts more than 18,000 delegates from over 130 countries.
At the conference, I shared my findings on the benefits of peer mentorship interventions – specifically the positive impact one patient can have on another by sharing their common experiences living with a disease such as lupus. The study was funded by the National Institute for Nursing Research (NINR/NIH) and conducted from 2018-2023. Over the past decade, much of my research has been focused on behavioral interventions to improve the quality of life for African American women with lupus. I was thrilled to have this conversation with a large global audience. My session, titled Someone Like Me – The Use of Peer Mentoring to Address Lupus Healthcare Disparities, was part of a broader conversation about exploring and managing inequalities in rheumatic and musculoskeletal diseases healthcare.
Here are a few highlights from my presentation at the EULAR European Congress of Rheumatology.
We are Creatures of Relationship
Just as a toxic relationship can negatively impact someone’s health, a positive relationship can heal or improve someone’s prognosis. In the realm of health and wellness, peer mentoring is a relationship where someone who has experience with a condition helps someone who has less experience with that same condition. Peer mentoring is particularly successful in low-income and minority populations because it is relationship-centered, non-hierarchical (no one is in charge), and reciprocal. Trust is key because low-income and minority populations typically have less trust in the healthcare system than others, so talking with someone who understands what they’re going through (such as lack of health insurance or transportation issues) can lead to better health outcomes.
Peer Approaches to Lupus Self-Management
The Peer Approaches to Lupus Self-Management (PALS) randomized controlled trial was born out of the desire to examine whether a new, culturally tailored peer mentoring program improves disease self-management, indicators of disease activity, and health-related quality of life in African American women with systemic lupus erythematosus. Thirty-nine mentors and 122 mentees participated in the five-year trial. They were engaged in peer mentoring activities by phone and video chat for one hour, bi-weekly for 24 weeks.
Mentors were instructed not to give clinical advice or dispense meds but rather to share their experience and model and encourage appropriate disease self-management activities. Each week of the intervention focused on a different topic. Sessions consisted of an introduction (general talking and catching up), structured education (slide show presentations and discussion), and problem-solving (discussion of specific issues and problems and how to deal with them).
I was pleased to share some preliminary findings with attendees at the EULAR European Congress of Rheumatology.
Although not statistically significant:
- We observed incrementally improving trends in patient activation, which is used to measure how actively involved an individual is in her own care, as the intervention progressed among mentors and mentees.
- We observed a subtle decrease in self-reported overall lupus disease activity among mentors and control participants (women who participated in small support groups).
- It was encouraging to see a decreasing trend in depression among experimental participants since we know that depression affects outcomes.
- We observed a similar decreasing trend for anxiety.
The measure of social functioning – maintaining relationships through daily activities like spending time with friends and family, was statistically significant. We saw an initial spike in scores of experimental participants, between baseline and mid-intervention. We saw the same spike in our measure of coping with their disease or lupus self-efficacy, which is statistically significant as well.
To close out my presentation, I felt it was important to emphasize the lives we’ve seen peer mentorship transform: the things we can’t show in charts and graphs. We’ve seen women begin taking their medications more appropriately and feeling better in the process; women communicating better with their spouses and families; women achieving independence in seeking providers that can deliver the best care. We’ve seen women secure housing, vehicles, jobs, and disability claims. We’ve had three PALS participants deliver healthy babies. We’ve had women supporting and encouraging each other through transplants, loss, and grief; women setting goals and being accountability partners for fitness programs. And we’ve seen so much strength, courage, and friendship, it has truly been amazing.
I’m grateful for the opportunity to share these findings at the EULAR European Congress of Rheumatology. Raising awareness about the benefits of peer monitoring and networking with global organizations that advocate for health equity are excellent ways to multiply the impact of our work, at home and abroad.
Written by Edith Williams, MS, PhD, dean’s associate professor in Health Equity Research, founding director of the UR CTSI’s Office of Health Equity Research, and associate professor of Allergy/Immunology and Rheumatology and Public Health Sciences.
University of Rochester Medical Center Forms Youth Advisory Board to Promote Health Equity
Thursday, June 1, 2023
The University of Rochester Medical Center’s Office of Health Equity Research (OHER) is inviting local high school students to join its Youth Advisory Board. Advisory board members will meet with URMC health equity researchers to provide insight into issues facing children and teens in the Greater Rochester area.
Youth advisory boards (YAB) can assist in identifying future research needs aimed at improving adolescent health and fostering a two-way exchange of ideas. Researchers value the contributions of youth members as community partners who provide a wealth of knowledge on health-related issues based on lived experiences.
YABs have become increasingly common, especially with major research institutions like the University of Rochester. Brown University implemented a YAB called Team 300 to study the effects of alcohol on young people nationwide. Harvard University also runs a YAB as part of its Making Caring Common Project, which focuses on moral issues and social challenges of young peer groups, such as bullying and exclusion.
Members of the URMC YAB will attend quarterly meetings with OHER staff and a team of health equity investigators that conduct research. The Board will review OHER research materials and discuss health equity projects that impact the community.
“We are excited to expand our research and make a greater impact on our community,” said Edith Williams, PhD, Founding Director of OHER. “Young people experience issues like health inequity differently and can lend a unique perspective that adults do not have. Our youth advisory board is a fantastic way to center youth voice and gain a deeper understanding of the Rochester community.”
URMC OHER is looking to fill 15 seats on the Youth Advisory Board. To qualify, youth must:
- Be 14-17 years of age.
- Be willing to attend regular meetings (at least one per quarter).
- Enjoy working in a team environment.
- Be interested in community service and health equity.
The Office of Health Equity Research will pay Youth Advisory Board members $50.00 for each one-hour meeting.
For more information and to apply, please visit the URMC OHER website.
Office of Health Equity Research Seeking Youth Advisory Board
Tuesday, April 18, 2023
The Office of Health Equity Research is seeking 14-17-year-olds from the Greater Rochester area to join its forthcoming Youth Advisory Board. Applicants who are selected will attend quarterly meetings at the University of Rochester and will be compensated $50 per meeting.
Youth Advisory Board members will provide valuable input on OHER research materials and discuss health equity projects with OHER staff. This input will help University of Rochester health equity researchers better understand youth perspectives, needs, and values, which will ultimately enable us to develop better and more equitable research projects.
- Discuss topics related to health equity research.
- Give feedback on research projects.
- Attend quarterly meetings with OHER staff.
- Review OHER research materials for accessibility to younger audiences.
Local youth can apply by filling out the OHER Youth Advisory Board Application Form.
Not a youth yourself? Please help us spread the word! Share this flyer with the local 14-17-year-olds in your life.
Watch OHER Strategic Planning Retreat Keynote Address
Friday, April 14, 2023
On April 10, the Office of Health Equity Research held its inaugural Strategic Planning Retreat, featuring a keynote address by the internationally renowned social scientist David R. Williams, PhD, of Harvard University. If you missed the retreat, you can watch Williams' keynote, "Reducing Racial Inequities in Health: The Fierce Urgency of Now," below. You can also view the keynote slides.
For a comprehensive recap of the entire retreat, visit the UR CTSI Stories blog.
Internationally Renowned Scholar to Keynote OHER Strategic Planning Retreat
Monday, February 27, 2023
The URMC Office of Health Equity Research (OHER) is thrilled to announce that one of the world’s leading scholars on racial inequity will keynote our Strategic Planning Retreat on April 10, 2023. David R. Williams, PhD, from Harvard University, will share insights on a topic that’s critical to our work – "Reducing Racial Inequities in Health: The Fierce Urgency of Now." Williams created the Everyday Discrimination Scale, which is the original and still-recommended scale for measuring perceived racism in society.
Williams is the Florence Sprague Norman and Laura Smart Norman Professor of Public Health and chair of the Department of Social and Behavioral Sciences at the Harvard T.H. Chan School of Public Health. He is also a professor of African and African American Studies at Harvard University. Williams previously taught at the University of Michigan and Yale University. He holds a master of public health degree from Loma Linda University and a PhD in Sociology from the University of Michigan.
Williams is an internationally renowned social scientist who focuses on societal impacts on health and is known for his groundbreaking research on how socioeconomic status, race, stress, racism, health behavior, and religious involvement can affect health. This foundational work ultimately led to the creation of his Everyday Discrimination Scale, which measures chronic and routine unfair treatment in everyday life.
Adopted from the Detroit Area Study, the Everyday Discrimination Scale asks respondents how often they experience unfair treatment in their day-to-day lives on a six-point Likert-type response format, from one being never to six being daily. The survey also asks respondents how often they feel harassed or treated with less courtesy than others. This scale has changed the way health and many other fields respond to discrimination experienced by marginalized groups.
Williams’ keynote address on Monday, April 10 from 9:00 – 10:00 a.m. is open to the public. To register for the virtual event, please visit the University of Rochester event page.
You may also download the event flyer to post in your area or share with others.
Meet the Office of Health Equity Research Team
Wednesday, February 8, 2023
After the launch of the Office of Health Equity Research (OHER) in 2021, Edith Williams, Ph.D., was named founding director of the office and started on September 1, 2022. Since then, Williams has launched a listening tour that spans the University and Greater Rochester community, hosted an inaugural OHER art contest and award ceremony, and added several new staff members to the OHER team.
||Edith Williams, Ph.D.
Williams spent the last 15 years in South Carolina teaching courses related to public health and health disparities while conducting lupus research. Edith is a Rochester native and a graduate of Rush-Henrietta High School. She enjoys live music, good food, and traveling.
Administrative Assistant to the Director
Jeanette has been working with the University of Rochester for 32 years and has worked in a number of areas throughout the university. She was born and raised in Buffalo, NY and she is a proud New England Patriots Fan.
Health Equity Research Assistant
Laurel is a freshman at the University of Rochester double majoring in Brain & Cognitive Science and Economics with a minor in Computer Science. A native of Singapore, Laurel is able to write with both of her hands!
Health Equity Research Assistant
Skylar is a fourth-year student at the University of Rochester studying psychology. She enjoys cooking, singing, traveling, and reading.
Sanjukta Bandyopadhyay, M.S.
Bandyopadhyay provides statistical analysis and data management support to public health and biological research studies. She earned a master’s degree in Medical Statistics from the University of Rochester in 2014 and joined OHER in 2022. She enjoys painting in watercolor and mixed media.
Ghent works with the OHER team to develop the office’s public relations strategy, including content marketing, thought leadership, and media relations. The goal is to raise awareness about the impact OHER is making on the Greater Rochester community. Ghent is the founder and CEO of WritLarge PR LLC, a Rochester-based public relations, marketing, and strategic communications firm. In his spare time, he enjoys playing golf, swimming, and gardening.
OHER is actively searching for a full-time project coordinator to manage project initiation, milestone identification, and project planning. The ideal candidate will excel at collaborating with project leadership to clearly identify and document objectives, scope, needed resources, and measures of success. The Project Coordinator will be expected to manage multiple initiatives simultaneously. We are looking for a flexible team player with excellent written and verbal communication skills for this role. Apply today using the link that best describes you (UR employee | outside candidate) and search for Job ID 241548.