The PATIENTS Program Perspective
The PATIENTS Program
The PATIENTS Program, in the University of Maryland School of Pharmacy, conducts patient centered research.
Issue 2; October 2024
Miss Bj, A Caring Advocate for Her Community
Barbarajean "Miss Bj" Robinson-Shaneman, Senior Program Specialist with the PATIENTS Program, always takes care of her community.
Recently, she partnered with the Center for Information & Study on Clinical Research Participation (CISCRP), a non-profit organization advocating for clinical research education. CISCRP hosts Journey to Better Health, a mobile exhibit that showcases clinical research information to local communities in a fun, interactive, way.
Miss Bj saw a chance to provide her community with information and education about clinical trials. She takes them through the mobile unit, showing them interactive information about the types of clinical trials, how they are used to create drugs and treatments, and more. Brochures are available in many languages providing information about clinical trials.
The exhibit shares information about examples of mistreatment such as Mrs. Henrietta Lacks, an African-American woman whose cancer cells were taken without her permission. Her cells are the original source of the HeLa cell line, one of the most important cell lines in medical research. The exhibit also talks about the Tuskegee study, where hundreds of African-American men, some of whom had syphilis, were told they were being treated for "bad blood," and given treatments including arsenic and mercury which ranged from mildly effective to toxic -- or no treatment at all, without their knowledge or consent to be used as test subjects for the disease.
She doesn't shy away from talking about how past mistreatment of members of the African American community in research has led to their mistrust of doctors, researchers, and the healthcare system. "I talk about the good, the bad, and the ugly," she says.
When she works with her patients to enroll them in research studies, she makes sure they know that taking part is their choice and they can stop at any time.
"My clients will come to me with a consent form for a study and ask me what I think," she says. "I'll go over the form with them, explain the information, and answer any questions they may have. They know I am looking out for them."
Her partnership with CISCRP is just one small example of her work.
Co-founder of the Park West Medical Center, 44 years ago, and Mind, Heart, and Body Program, 30 years ago, her path of giving back to the community began. Her medical practice in research of hypertension, diabetes, and other health-related disparities with Dr. Elijah Saunders for more than 25 years allowed her to work within the communities she loves.
Miss Bj has been recognized with countless awards, most recently receiving the LeadHERship Award at the 2024 Forward Women's Leadership Forum.
Watch the video below to learn more about the Journey to Better Health Mobile Exhibit. At 1:47 in the video, Miss Bj talks about the importance of taking part in clinical trials.
PATIENTS Program Receives $9.4 Million Grant to Start a Health Equity Research Hub at UMB
As a recipient of a $9.4 million award through the National Institutes of Health’s (NIH) Common Fund Community Partnerships to Advance Science for Society (ComPASS) program, we are excited to serve as a Health Equity Research Hub to support several NIH-funded Community-Led, Health Equity Structural Interventions (CHESIs) nationwide.??
Our goal is to provide technical assistance, and scientific support and guide the evaluation and reporting of community-led health equity research.
Why is this important???
Innovative: Each unit within the Hub is co-led by a community leader and UMB leader. All of whom have vast experience in health equity research and social determinants of health.??
Significant: Meaningful, transparent, and bidirectional engagement increases willingness of patients and communities to participate in – and ultimately lead – health equity research.
Longevity: Our Hub leadership and governance reflect community leaders from longstanding research partnerships. ComPASS is designed to support community-led research rather than asking patients and communities to join “our” academic research projects.??
The Hub, using the extensive expertise at and resources from UMB, will provide technical assistance and scientific support to several NIH-funded Community-Led, Health Equity Structural Interventions (CHESIs) nationwide. The grant is led by C. Daniel Mullins, PhD, executive director of the PATIENTS Program and a professor of practice, sciences, and health outcomes research at UMSOP.
The goal of the Health Equity Research Hub at UMB is to provide resources and expertise to help the CHESIs achieve the goals of their ComPASS funded awards. The Hub also will guide the evaluation and reporting of community-led health equity research.
“This is a wonderful opportunity to support CHESIs while modeling our longstanding community-academic partnership approaches,” says Mullins. “We can simultaneously achieve the overarching goal to serve as a catalyst for CHESIs to complete their ComPASS projects in a rigorously scientific manner, while supporting community-led health equity research. All CHESI projects address social determinants of health to advance health equity.”
Rev. Franklin Lance, DMin, senior pastor at Mount Lebanon Baptist Church and community co-lead for the award, added, “We are the right team at the right place because we do this work already. We believe in this work and know how to let communities take the lead. We believe in equity and the shifting of power that needs to take place, and how, with authentic collaboration, research is better.”
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The hub structure consists of three units. Each of these units is co-led and supported by a community partner and a UMB expert:
Community Co-Lead: Dwyan Monroe, BA, Training Manager, Institute for Public Health Innovation
UMB Co-Lead: Hillary Edwards, PhD, Director of Methodological Research and Evaluation, the PATIENTS Program, University of Maryland School of Pharmacy
Support team members: Dan Frye, JD, Director of Employment and Professional Development and Patient Advocate, National Federation of the Blind and Jay Unick, MSW, PhD, Professor, University of Maryland School of Social Work
Community Co-Lead: Randal Pinkett, PhD, Founder, Chairman, CEO, and Managing Partner, BCT Partners
UMB Co-Lead: Brad Maron, MD, Executive Co-Director, University of Maryland Institute for Health Computing and professor of medicine at the University of Maryland School of Medicine
Support team members: DeJuan Patterson, CEO, Bridge Advisory Group, LLC and Timothy O’Connor, PhD, Co-Director, The Program in Health Equity and Population Health (HEPH) at the University of Maryland School of Medicine
Community Co-Lead: Frances “Toni” Draper, MBA, MEd, DMin, CEO, and Publisher, The AFRO American Newspapers
UMB Co-Lead: Claudia Baquet, MD, MPH, Affiliate Professor of Practice, Sciences, and Health Outcomes Research, University of Maryland School of Pharmacy
Support team members: Joy Bramble, Owner and Publisher, The Baltimore Times, and Esa Davis, MD, PhD, Associate Vice President for Community Health and Lead Strategist for Health Equity, UM Institute of Health Computing at UMSOM
All three units work with the co-leads in the Administrative and Coordinating Unit:
The CHESIs served by UMB’s Health Equity Research Hub will be named this fall.
Michelle Medeiros Spotlights Patient-Centered Research in Las Vegas
The PATIENTS Program's Michelle Medeiros, MS, MA, CCRP, Administrator Business Operations Assistant and Director of Research, presented at the Society of Clinical Research Associates (SOCRA) 's 33rd annual conference in Las Vegas on September 29. She closed out the conference with her presentation on "Patient-Centered Research: Case Study and Practical Applications."
In her presentation, she:
Patient-centered outcomes research presents value to the community, in that "per the Patient-Centered Outcomes Research Institute, PCOR helps people and their caregivers communicate and make informed health care decisions, allowing their voices to be heard in assessing the value of health care options," she explains.
She presented information about the PREP-IT trial, two sister trials developed to study antiseptic use on fracture surgery patients (A-PREP and PREPARE.) The patient stakeholders of the trial were involved in protocol development, site initiation visits, presentations, and co-authored manuscripts.
A critical component of patient-centered outcomes research is returning the results to the study participants. Many researchers omit this important step and simply make a copy of the manuscript available for review.
She encouraged creativity in presenting the results or creating a give-back to the community. Infographics, flyers, and podcast episodes are all viable options.
"Participants must be asked how they want to receive the results," she explains. "It's important to include patients and family members as partners in the process, recognize patients and family members as experts, and seek to understand how patients want to receive the results."
President at Hope Institute LLC
4 个月Dear Nurse BJ..thank you for your caring, your love of truth and community and the hope you bring to thousands of people and communities. You are an appreciated inspiration. Claudia ??