By Johonniuss Chemweno
The democratization of healthcare implies more knowledge, convenience, and empowerment of the patient to become more responsible for their own care. One of the continued challenges faced by the field of medicine is to collaborate in ways that actually lead to improved outcomes for patients.
The democratization of healthcare seems promising, but the road ahead is challenging for healthcare providers. A growing number of communities have proven that data democratization improves health structures and overcomes barriers to help communities of color respond to the health challenges of COVID-19. The inconsistencies at state level have demonstrated how the pandemic has disproportionately impacted people of color. The spread of the pandemic has been a shared concern for all of the American public as the mortality rate for Black Americans is 2.3 times as high as white Americans.
Data democratization has a profound connection with racial equity, and with histories of trauma and data extraction. Black, Indigenous, and Latinx Americans bear a disproportionate burden of disease and educational inequities. Intersections between demographic analysis and indigenous identities help to understand systemic inequities. Consequently, data democratization helps people of color to design, manage, and access their own data concerning healthcare, food, and education. Moreover, they learn to prioritize essential resources they want to pursue such as food, employment, education, and childcare. In broader perspective, data democratization will help marginalized communities to determine their own governance. Therefore, both at the individual and collective level, data democratization is advancing racial equity among communities of color.
Sustained engagement and advocacy in changing local systems through digital connectivity
To improve healthcare information for communities of color, cost-effective and robust back-end infrastructure will help these communities use their own data to mobilize for action and achieve transformative change in programs, policies, and services. A countywide effort that brings together smaller community-based organizations with large health systems and social services is the Community Information Exchange (CIE) in San Diego. Members of the CIE utilize real-time data shared across a diverse group of regional stakeholders (i.e., food pantries, childcare organizations, public health departments, etc.) to better coordinate with other sectors. This has become more useful during COVID-19 and other emergencies by helping people obtain the accurate and up-to-date information they require.
A hardware and software revolution is taking place in healthcare. Through internet access and usage of smartphones, people of color have more means to seek medical information, peer support, and clinical studies, as well as guidelines providing information about self-care. For example, Streetwyze is an innovative mobile app that mobilizes marginalized community members to take part in COVID-19 response initiatives and create public safety and health awareness among communities of color.
A mobile app can allow marginalized communities to get important information regarding COVID-19. They can use mobile phone technology to obtain all the available options for testing, get test results, and obtain notifications of when and where to get vaccinated, as well as prove negative tests and receipt of vaccinations. This empowerment can help alleviate the stress of navigating the healthcare system and give the patient more choice in service and cost.
Testing has been made free and available for the communities that are most impacted by COVID-19, namely communities of color. The Families First Coronavirus Response Act, passed in March 2020, eliminated cost sharing for services related to COVID-19 testing for those with private insurance and granted the option to cover costs for uninsured patients. The Coronavirus Aid, Relief, and Economic Security Act expanded the range of tests covered by insurers.
Leading medical and public health groups have called for the release of available racial demographic data about infection rates, hospitalizations, and mortality from COVID-19. Moreover, the demographic data received during COVID-19 testing is a step in the right direction to cover systemic disparities and ensure all members of communities of color have access to COVID-19 medical facilitation. This data can be compiled into a dashboard that is updated in real time and coordinated by state officials. Furthermore, process transparency and accountability can demonstrate that communities are receiving the resources they require.
People from vulnerable populations who have COVID-19 symptoms may not be referred for testing as frequently as their white counterparts. Lack of testing could mean further spread and more patients not seeking medical help until they are seriously ill. Therefore, the federal government should ensure that all communities of color requiring medical care related to COVID-19 have access to it. This effort would involve organization of public health approaches to provide transportation to existing testing sites and to set up testing sites directly in community hotspots to improve access for symptomatic individuals and their contacts.
The key to improving equity is gathering more accurate race-, ethnic-, and neighborhood-specific data. Knowing who is affected by the coronavirus and who is bearing the most burden is important to address the imbalances in testing and treatment. Sustainable data democratization improves engagement and advocacy in changing health systems and social services for people of color.
Johonniuss Chemweno is CEO of VIP StarNETWORK, LLC.