As both a patient and a health care professional, I am eagerly anticipating the AcademyHealth Annual Research Meeting (ARM 2024). This is a pivotal meeting for the research community, and this year I am grateful for the opportunity to co-chair one of the many themes "Individuals Living with Disability or Other Complex Conditions" with Dr. Shriram Parashuram from NORC at the University of Chicago. Our planning discussions were intense, covering diverse perspectives, but with a shared, unwavering commitment to the community. We hope to expand on those conversations and to foster a meaningful dialogue that merges personal experiences with scientific research.
The Centers for Disease Control and Prevention (CDC) reports that an estimated 61 million adults in the U.S. live with a disability. Furthermore, around 129 million individuals have at least one major chronic illness, such as heart disease, cancer, diabetes, obesity, or hypertension. These figures represent about 51.8 percent of the civilian, noninstitutionalized adult population, with 24.6 percent having one chronic condition and 27.2 percent having multiple conditions, underscoring the significance of our topic.
My personal journey, marked by multiple disabilities and chronic conditions, has profoundly influenced my perspective on health care and strengthened my resolve in advocacy.
Selecting from a plethora of insightful submissions was challenging for Dr. Parashuram and me. Each submission reflected a researcher's commitment to enhancing lives and offered hope for patients like myself. Through collaboration with a dedicated team, we have crafted a program that spotlights innovative research and the multifaceted challenges faced by individuals with complex health conditions. These submissions are more than academic studies; they are narratives that emphasize the need for empathy and advocacy in health care.
Care for Individuals with Complex Conditions
Monday, July 1, 2024 8:00 - 9:15 AM EDT
Led by Dr. Parashuram, this session will explore the lifelong challenges faced by individuals with complex conditions. Highlights include the SEER-CAHPS study by Kim Danforth's team, examining the care experiences of those newly diagnosed with cancer, especially the complexities of managing concurrent health conditions. Seyeon Jang's analysis will shed light on the financial impact of prescription drug costs for patients with Alzheimer's Disease and Related Dementias (ADRD), informing policy decisions with data spanning 2003-2021.
Care for Individuals with Disabilities
Sunday, June 30, 2024, 1:45 - 3:00 PM EDT
This session, which I have the honor of chairing, will focus on the obstacles to accessible care. Discussions will include the challenges faced by Medicare beneficiaries with disabilities, as presented by Emma Achola's team. Additionally, Megan Morris's comparative effectiveness trial seeks to improve communication between health care providers and patients with communication disabilities, a vital component of patient-centered care.
Implementation of the NIH Disability Inclusion Recommendations 2024 Progress Report Monday, July 1, 2024, 11:00 - 12:15 PM EDT
This session will present the NIH Disability Inclusion Recommendations 2024 Progress Report by Dr. Jae Kennedy, Dr. Bonnielin Swenor, and Dr. Alison Cernich. It will examine the impact of these recommendations on health research and policy, aiming to connect empirical data with the realities of lived experiences.
Poster Session: Individuals Living with Disability or Other Complex Conditions
Sunday, June 30, 2024, 8:00 - 9:15 AM EDT
The poster session will complement the main events, presenting a tapestry of research that reflects the field's diversity. It offers a chance to engage with cutting-edge findings and network with peers.
The theme of our meeting is not merely theoretical; it mirrors the daily challenges of those living with chronic illnesses and disabilities.
Our goal is to dissect and discuss the barriers to care for individuals with disabilities. We will not only spotlight the hurdles but also present innovative solutions that envision a more inclusive future, where health care fully embraces the individual and the nuances of living with a disability or other complex conditions
To find the agenda and a more in-depth summary of our theme (including location for those attending) check out https://academyhealth.org/page/2024-arm-agenda