MDisability, a collaborative Family Medicine program, is plowing a path forward in improving primary care for people with disabilities. Associated faculty are moving the needle on this effort through clinical care, medical education, research and community partnerships.
One of the most tangible efforts is the new clinic MI-CARE (Michigan Improves Care, Access, Resources, and Experiences) for people with intellectual and developmental disabilities (IDD), among the first specialized clinics in Michigan to care for those with intellectual and developmental disabilities (IDD). The clinic had its beginnings at Michigan Medicine’s Chelsea Health Center and will officially move to the Dexter Health Center in January 2024.
“The goal of the MI-CARE for IDD clinic is in the name, to Improve Care, Access, Resources, and Experiences for Adults with Intellectual or Developmental Disabilities,” said clinic leader Brianna Marzolf, D.O., who is also the inaugural fellow for the newly established Disability Health Fellowship in Family Medicine. The program commenced this past summer.
“My passion and long-term career goal is to transform how the medical field cares for persons with disabilities. The University of Michigan Family Medicine Department shares the same goal,” she added.
Current plans include holding clinical services twice monthly, on the 2nd and 3rd Monday afternoon at Dexter, with an intent to increase services weekly depending on demand for such services. Marzolf is now accepting new patients with IDD who are in need of consultation or primary care provider (PCP). Physicians across Michigan Medicine will be able to use the I-CARE for IDD clinic as a consult resource. Marzolf will follow patients in the I-CARE clinic for several visits (with virtual visits as an option); collaborate with a multidisciplinary team; and offer suggestions to a patient’s acting PCP.
Her goal is to build this multidisciplinary team to include social work, psychology, psychiatry and community mental health providers, physical medicine and rehabilitation, and pharmacy experts. She also wants to offer “e-consults” in the future and expand the consult service to patients outside of Michigan Medicine and across the state. Medical students and residents of any specialty can also work and learn in the I-CARE clinic.
“The MI-CARE for IDD clinic is a huge step for us as health providers whose mission is to expand primary care services for underserved populations, specifically those with intellectual and developmental disabilities,” said Michael M. McKee, MD, MPH, associate professor with the Department of Family Medicine and director of MDisability, who is currently on the first half of his sabbatical from U-M and learning disability health policy work at Brandeis University
Continuous training for effective disability health advocacy
Tyler G. James, Ph.D., MCHES®, who is serving as acting director for MDisability while McKee is on sabbatical, was recently accepted to the Rare Disease Clinical Research Training Program, an R25 training program funded by the National Institutes of Health. The program teaches medical professionals how to conduct clinical research on rare diseases. He is one of only 50 scholars selected to take part in the program this year.
“I am interested in rare genetic conditions that lead to people experiencing sensory disabilities, primarily DeafBlindness and specifically, CHARGE syndrome and Usher syndrome.” James said. “My goal is to explore the diagnostic odyssey for individuals who are DeafBlind and identify opportunities to improve care coordination to decrease the delay in appropriate diagnosis.”
CHARGE syndrome and Usher syndrome are two of the leading genetic causes of DeafBlindness in the U.S. For more information about these syndromes, click here.
James also noted that the quality of healthcare services for people who are DeafBlind is poor and that in some developmental disabilities (such as autism), there are significant racial and socioeconomic disparities in getting a timely diagnosis.
“I am excited to participate in this program because of the quality of training provided,” James said. “Early-career researchers interested in the breadth of rare diseases are in meetings with senior researchers, discussing grant writing, small sample statistics, and study design considerations unique to rare diseases. I really see this program as an incubator for improving the size and quality of the rare disease scientific workforce.”
For more information about the training program, click here.
Conducting disability care-focused studies
Another major research effort that MDisability-affiliated faculty is doing to increase health equity for those with disabilities includes studying ways to reduce medication-related challenges among adult patients with IDD.
Polypharmacy -- or the simultaneous use of multiple medications to treat one condition or ailment in an individual -- is a significant problem for adults with IDD. These patients face an elevated risk of adverse medication and health outcomes due to being prescribed many medications, medication interactions, and adherence challenges.
McKee and Steve Erickson, PharmD, associate professor in the College of Pharmacy recently secured a one-year, $50,000 grant from the Blue Cross Blue Shield of Michigan Foundation to conduct the study. Recruitment is taking place now.
Research shows that patients with IDD are more likely than the general population to experience hospitalizations for an adverse medication reaction, have worse overall health, are less monitored by clinicians, and have lower adherence to treatments. Additional research also shows that these differences in health outcomes are magnified by patients with IDD from minority communities.
Despite these observable differences in care, few clinical models or guidelines currently exist to guide providers on how to care for patients with IDD taking multiple medications, especially those from underrepresented minority communities.
“Addressing these intersectionality factors, along with system-wide barriers, will be critical to reduce health inequities for those with IDD,” McKee said.
The study will assess whether pharmacist-led comprehensive medication reviews in primary care settings improve health outcomes for adults with disabilities. The project will focus its analysis on the health outcomes of adult patients with IDD who live in community settings and who take five or more prescribed medications.
The researchers will also conduct a root cause analysis to determine drivers of medication-related health problems among these patients to improve medication management policies and procedures.
“Through our project, we hope to equip providers with the information that they need to better care for their patients with unmet needs,” Erickson said. “We feel it’s important to introduce the expertise of pharmacists into treatment processes so that we can help patients with IDD manage their medications and to ultimately reduce care inequities in this patient population.”
