MGB aims to ensure that the ePRO data influencing care delivery isn’t coming from a homogenous patient sample but a group representative of the diverse patient populations they serve. This required MGB to identify inequities in access that exist in both the technology platform and operations of the program.
Below are three examples of the changes MGB made to ensure their PROMs program was inclusive.
Build for patients with the greatest need
Many digital health tools are designed for patients who have access to health care and few barriers to digital technologies. However, MGB leadership recognized that in order to improve outcomes for all patients, they would need to build for their highest-need patients, especially those without access to specific technologies, and/or who lack digital or health literacy. The ePRO team now consistently reflects on the question of “who is the system built for?” and challenges themselves to build for patients who might be outliers or have the greatest need.
Advice from MGB
If ePRO data is coming from a homogenous population, you can’t use it to make predictions about everyone.
Dr. Nadine Jackson McCleary
Mass General Brigham
Think beyond digital inequities
Often when organizations implement PROMs programs, they focus on addressing digital inequities (e.g., access to smart phones, tablets, internet connectivity). However, it is equally as important to account for the languages and literacy levels of the patients being served. For example, MGB’s patient questionnaires were initially offered only in English and were inaccessible to patients who were visually or cognitively impaired.
In 2020, MGB embarked on a system-wide initiative (United Against Racism) to close disparities and increase health care equity. As part of this effort, MGB’s PROMs program has now translated and built over 500 questionnaires in seven different languages (Spanish, Portuguese, Traditional Chinese, Haitian, Creole, Arabic, and Russian). Additionally, dedicated coordinators are now available to help patients fill out their questionnaires as needed.
Identify and address bias in operations
MGB discovered that bias can exist not just in ePRO platforms and questionnaires but also in survey distribution channels. For example, MGB found that their front desk staff were less likely to offer ePRO tablets to patients of color compared to white patients. Program leaders then met with staff to discuss the problem. By simply pointing out the disparity and providing education, MGB increased tablet distribution from 30% to 86% in two months.