Inequities in health care have always existed and been exacerbated by social determinants of health such as access to and quality of food, housing, transportation, and health care. However, they have gained particular attention over the past two years due to the COVID-19 pandemic. At the onset of the pandemic, individuals were unable to access healthcare services normally due to local shutdowns, leading to the increase of these inequities. Many people were forced to turn to telehealth services, which ultimately highlighted the digital divide, or the gap “between those who have access to technologies and the digital literacy to work them, and those who don’t.” This gap disproportionately affects underserved and underrepresented groups in health care.
Digital health technologies have the potential to increase access to healthcare services and, subsequently, help activate communities to engage in their health. However, this is only possible if digital health technology adoption takes an inclusive approach with all communities in mind.
In January 2022, the White House Office of Science and Technology Policy (OSTP) sent out a request for information to learn how digital health tools are used, or could be used, to transform community health and health equity. Evidation provided input based on the organization’s expertise and experience in person-generated health data (PGHD) collection and disaggregation.
PGHD is a novel form of health data that is generated by individuals themselves in their own environments, which is crucial in understanding social determinants of health, and typically includes self-reported information on behavior, symptoms, and quality of life, as well as data from wearable sensors.
Evidation’s contributions aligned with the following key points from the compiled Stakeholder Engagement Report issued by OSTP in May 2022.
The Importance of Data Collection and Reporting
The report states that organizations, providers, and local governments could benefit from more frequent, actionable data being returned to them. While there are many efforts to gather data, there seem to be challenges in reporting it back for use at the community level.
In March 2020, Evidation designed and promoted a longitudinal study titled COVID-19 Symptoms and Experience Study in partnership with public health agencies, healthcare organizations, and academic medical centers. The goal of this study was to better understand the impact of COVID-19 on the lived experiences and wellbeing of Americans.
Over 97,000 individuals consented to make their data publicly available to qualified researchers through Evidation and the National Institutes of Health (NIH). COVID-19 symptoms, pandemic-related health behaviors, and experiences including telemedicine use were captured on a daily basis through wearable devices, health apps, and surveys. Through this study, Evidation was able to capture the data that local governments and health systems deemed most useful at the onset of the pandemic.
This serves as a prime example of how the Federal Government can support the transformation of community health settings in the immediate future – by supporting diligent disaggregation of available datasets. Doing so then lays the foundation for organizations and providers involved in community-based health care to intervene appropriately and effectively.
The Need to Co-Create with Others
The OSTP’s Stakeholder Engagement Report highlights how critical it is to listen to and co-create with individuals, caretakers, and community-based organizations on their technological needs. The most successful interventions work with communities to prioritize their needs and goals, doing so early and consistently in an effort to achieve prompt identification of successful solutions and simple implementation.
In April 2021, Evidation and the American College of Cardiology (ACC) launched Heart Health on Evidation, a nationwide initiative focusing on the lived experiences of individuals with heart failure and its associated comorbid conditions beyond the clinic walls. The goal of this initiative is to use PGHD to understand patients’ needs and sources of value which could improve both engagement and outcomes. Through PGHD, the Heart Health program engages individuals in personalized journeys and nudges them towards guideline-supported actions.
Compared with other race/ethnic groups, Black patients have the highest incidence and prevalence of heart failure (HF) as well as the worst clinical outcomes. Thus, it was critically important to continue developing the program with communities who stand to benefit most from digital innovations. In November 2021, Evidation launched a collaboration with Project TECH – a faith-based organization in South Carolina serving African American communities across the Atlantic seaboard – to create an innovative co-learning environment.
Through in-person events, interviews, and design workshops, individuals from Project TECH learn about how to integrate health and technology from Evidation while Evidation learns from individuals about barriers and the perceived value of integrating health and technology. At one in-person meeting with individuals from Project TECH in Columbia, SC on January 8, 2022, Evidation asked individuals a series of questions to better understand barriers they have encountered when it comes to health and technology. Responses showed that individuals were motivated to stay healthy for their families and community, and they were excited about expanding their understanding of technology’s use for health. Many cited day-to-day fears of privacy, not being able to learn or not having confidence when using technology, and needing support.
This demonstrates how important it is to work hand in hand with communities. As the OSTP summary report noted, high-tech health solutions are often looked at as transformative. However, simpler approaches might yield the best results from the community perspective. If the technology industry, governments, and communities work together, solutions and programs can be tailored to the specific needs and challenges experienced by a group of people in support of improving health outcomes.
There is a tremendous opportunity to improve diversity in research, address long-standing disparities in care, and help individuals and communities take a more active role in their own health by taking evidence-based actions, all while allowing the individual to maintain privacy and control of their data. With health technology becoming more and more present, particularly after the telehealth boom that followed the onset of the COVID-19 pandemic, it is crucial that we take advantage of digital health technologies and use digitally inclusive approaches to co-designing with communities to improve how we conduct research and deliver care for optimal results.