Demographic differences in willingness to share electronic health records in the All of Us Research Program
Authors Cathryn Peltz-Rauchman and Christine Joseph discussed this month's JAMIA Journal Club selection:
Joseph C, Tang A, Chesla D, Epstein M, et al. Demographic differences in willingness to share electronic health records in the All of Us Research Program [published online ahead of print, 2022 April 26]. J Am Med Inform Assoc. 2022;ocac055. doi:10.1093/jamia/ocac055
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Cathryn has developed a strong background in orthopedic research, epidemiology and patient-centered outcomes research. Dr. Peltz worked in the Bone and Joint Center at Henry Ford Health System (Henry Ford Health) conducting orthopedic research before joining the Henry Ford Health Department of Public Health Sciences to oversee the All of Us Research Program and focusing on precision medicine and patient-centered outcomes research (PCOR).
This move was motivated by her desire to conduct cross-discipline research between clinicians and epidemiologists. This approach brings the patient voice to forefront in research projects, the results from which can directly impact and improve the patient’s clinical care. This type of patient-centered research can also increase the efficiency of care by determining what patient-centric factors are related to successful clinical outcomes.
Dr. Christine Joseph is a Senior Epidemiologist in the Department of Public Health Sciences. Her research interests include racial/ethnic health disparities, adolescent health, asthma and allergic disease, adherence, and school-based health management. She has experience in the design and implementation of community-based and pragmatic clinical trials. She is currently Director of the Henry Ford Health System Health Disparities Research Collaborative (HDRC). The HDRC Scholars program provides training and mentorship for physician investigators, as well as providing research exposure and training to undergraduate and graduate students.
Dr. Joseph was Principal Investigator of a series of NIH-funded projects that led to the development, implementation, and evaluation of a web-based, asthma management tool known as Puff City. In addition to asthma, Dr. Joseph has worked on a variety of studies focusing on populations made vulnerable by structural racism and social determinants of health, and has publications in the areas of asthma, food allergy, sleep, LGBTQ health, food insecurity, and health literacy. She is a recipient of federal, state, and foundation funding, and has served as a permanent member on two NIH review panels. She served a three-year term on the Patient-Centered Outcomes Research Advisory Panel on Healthcare Delivery and Disparities Research and has also served on State committees centering on asthma surveillance and epidemiology and on the elimination of racial disparities in asthma.
JAMIA Journal Club managers and monthly moderators are JAMIA Student Editorial Board members:
Statement of Purpose
The use of electronic health records (EHR) in medicine is growing exponentially and with that growth comes an expansion of research capabilities. Other studies have shown certain demographic groups (racial/ethnic minorities, people with low education, females) may be less likely to consent to share their EHR. This study focuses specifically on the All of Us Research Program, which prioritizes the participation of those traditionally underrepresented in research.
This report not only allows some reflection on patient attitudes toward research but provides valuable insight into the general acceptance of tenets essential to the success of this large, national study. While the number and characterization of persons that decline access to their EHR information could inform the potential for bias, we found that the majority of persons willing to participate in the program are also willing to share access to their EHR information. In this population, this is true even for racial and ethnic minoritized groups although differences in the distribution of age, education and sex need to be considered.
The target audience for this activity is professionals and students interested in health informatics.
After participating in this webinar the listener should be better able to:
- Familiarize themselves with the All of Us Research Program
- Understand possible bias in the availability of electronic health records (EHR)
- Better understand possible reasons for not sharing EHRs.
- 35-minute presentation by article author(s) considering salient features of the published study and its potential impact on practice
- 25-minute discussion of questions submitted by learners via the webinar tools and moderated by JAMIA Student Editorial Board members.
The American Medical Informatics Association is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.
No commercial support was received for this activity.
Disclosures for this Activity
The following planners and staff who are in a position to control the content of this activity disclose that they have no financial relationships with commercial interests/ineligible entities:
Presenters: Christine LM Joseph; Cathryn Peltz-Rauchman
JAMIA Journal Club Planners: Harry Reyes Nieva; Kirk E. Roberts; George Karway
AMIA Staff: Susanne Arnold