mHealth Data Collaborative Sets its Sights on Diversity and Equity

A digital health collaborative launched in May has set its sights on developing best practices to address the social determinants of health.

The Digital Health Measurement Collaborative Community (DATAcc), an offshoot of the Boston-based Digital Medicine Society (DiME), announced this week that it would focus its efforts for now on “the challenge of diversity, equity and inclusion in digital health measurement.”

“Equity in health, healthcare, and health outcomes has been a pressing and persistent challenge for decades. Right now, the field has the unique opportunity to build the digital health measurement toolbox with intention, and build it right.” DiME CEO Jennifer Goldsack said in a press release. “In order to do this, we must create a set of standardized criteria for the inclusion of diverse populations throughout the development, deployment and commercialization phases of a digital health measurement product. This standardized approach will also allow stakeholders to evaluate whether representative data can be collected and help them to identify where there may be disparities in data collection and health outcomes downstream.”

The group, comprised of digital health vendors, organizations like the American Telemedicine Association, AdvaMed, the Connected Health Initiative and the Consumer Technology Association, and health systems or affiliated teaching institutions like Johns Hopkins Medicine, the University of Rochester Medical Center, the University of Louisville and Duke University, is jumping into a crowded pool.

While the coronavirus pandemic helped propel telehealth and mHealth use to new levels, it also exposed the challenges that underserved populations face in accessing care. These include not only physical barriers like geography, but social and economic barriers that can hinder or prevent people from accessing digital health tools.

Those barriers also affect how connected health tools and programs are developed and used, in some cases compounding the challenges of access.

“We need a rating or certification system for determining if a digital health product has been developed and tested with considerations for different populations’ needs - from those not proficient in English, to those with digital health literacy gaps or those lacking sufficient internet access,” Amy Sheon, PhD, an advisor to the National Digital Inclusion Alliance, said in the press release. “This would be immensely useful in ensuring that digital health measurement products can benefit a broad cross-section of society.”

To that end, DATAcc has come up with two goals:

1. To ensure that a broad spectrum of diverse voices (e.g. different races and ethnicities, people with disabilities, all ages, genders, geographies, socioeconomic status, education levels, health status, and sexual orientations) are included in each stage of the product development lifecycle so that diverse populations can utilize and benefit from digital health measurement; and  
2. To standardize the evaluation of inclusivity in the development, deployment and commercialization of digital health measures across contexts of use.

“It is important to empower stakeholders to ensure equitable access to high quality, safe, and effective digital health technologies,” Anindita Saha, Assistant Director of the Digital Health Center of Excellence in the FDA’s Center for Devices and Radiological Health and the organization’s liaison to DATAcc, said when the group was launched in May. “DATAcc can advance efforts to build the science and evidence generation for all people by keeping health outcomes and health equity front and center.”