Mass General Brigham has launched a campaign to collect more accurate and complete demographic data from its more than one million adult primary care patients, with the goal of improving access to healthcare programs and services. Demographic information like ethnicity, age, and medical history is crucial in determining a patient’s susceptibility to certain diseases, which treatments are most effective, and ultimately providing tailored, equitable care for all.
Currently, Mass General Brigham’s data for patients’ race/ethnicity/language has up to a 20% rate of missing data depending on location. The new goal will be less than a 5% rate of missing data across the primary care population, with a plan to target specialty care next.
“There are very clear inequities between patients based on their race, ethnicity and whether English is their primary language,” says Allison Bryant, MD MPH, Senior Medical Director for Health Equity at Mass General Brigham. “Without quality data, our decision-making falls flat about how we equitably distribute programs and services.”
Beginning this June, Mass General Brigham’s Quality & Patient Experience and United Against Racism teams will conduct a broad, phased patient outreach campaign via a mailed demographic survey, followed by digital messages through our patient portal this summer, to encourage patients to report or re-confirm their demographic information.
One issue the team is hoping to eliminate is reporting a patient’s ethnicity or gender identity based on physical appearance alone. Personal characteristics offer limited information, and clinicians can be swayed by implicit biases. Visible, bodily attributes cannot alone determine a person’s race, ethnicity, or gender identity—the “gold standard” is having a patient self-report.
All patients will be asked to share race, ethnic background and language (REaL); sexual orientation, gender identity, sex assigned at birth, and pronouns (SOGI); and disability and accommodation needs. Sharing this data is encouraged, but not required.
The data will be used in making decisions to improve care access, including availability of languages and interpreters to help patients; development of new online healthcare tools; and additional assistance for patients to help access food, medicine, accommodations, and other needs. This secure data can only be accessed by patients’ clinicians, clinical support staff, and the quality improvement staff. All information is part of patients’ medical records, which protected by law under HIPAA.
Teams spearheading the project will work with clinicians across the system to help patients who may be hesitant to share information understand how better data can enable tangible improvements in health equity. Ultimately, this data will help inform how we improve care for vulnerable patients and foster ongoing, equitable changes across our healthcare system.
Mass General Brigham:
Bridget Perry email@example.com
Mass General Brigham is an integrated academic health care system, uniting great minds to solve the hardest problems in medicine for our communities and the world. Mass General Brigham connects a full continuum of care across a system of academic medical centers, community and specialty hospitals, a health insurance plan, physician networks, community health centers, home care, and long-term care services. Mass General Brigham is a nonprofit organization committed to patient care, research, teaching, and service to the community. In addition, Mass General Brigham is one of the nation’s leading biomedical research organizations with several Harvard Medical School teaching hospitals. For more information, please visit massgeneralbrigham.org.