By Krystal Redman (KR), DrPH, MHA, (they/she), Executive Director
During the San Antonio Breast Cancer Symposium (SABCS) I attended the Big Data and Health Equity session, which had two panel discussions: 1) The use of data to provide services to specific populations, including telemedicine and virtual clinical trials, and 2) Patient privacy and use of data to provide services. From the discussions, the central theme arose that data can be instrumental when looking for better ways to serve patients, but this must be done right.
In ensuring that diverse populations are not excluded, there is no substitute for lived experience. According to Charlotte Owens, M.D., F.A.C.O.G, using data to provide services to diverse populations starts with ensuring diversity among those that are reaching into the communities. To earn people’s trust, you need to meet them where they are. While Black and Brown patient mistrust is often attributed to historical events, it’s not just a thing of the past. When you rush patients, or aren’t listening to them, etc., that creates or perpetuates mistrust in the present for all patients despite their identities.
Data from clinical trials can be used to provide services to BIPOC people, but to get these populations to enroll in the trials, it’s important to include them from the program’s inception, not just as an afterthought, after the trials have started, but even during the design of the research and clinical trial. This requires building trust. Some of the concerns that can feed mistrust relate to data privacy. How do we ensure our (patients’) data is protected? Our data is highly personal, comprising our personal information, medical information, and experiences. How are researchers protecting our data and the management of data–essentially, how are you protecting your patients and clinical trial participants?
As panelist Andrea Downing (with The Light Collective) stated, “Can’t trust if the data that patients are sharing is being used by ‘bad actors’ against us!” The panel keynote was by Dr. Barbara Segarra-Vazquez (Professor, School of Health Professions, University of Puerto Rico), who led a discussion on inequities in Big Data and Telemedicine. Dr. Barbara Segarra-Vazquez noted that there continue to be major barriers in patient engagement in trials and big data generation, and because of lack of engagement, there continue to be gaps in the science. These gaps have consequences. For example, cancer diagnoses are often made later in BIPOC populations, and some cancers have a higher mortality rate among minorities.
Disparities in patient outcomes are often due to a failure of researchers to capture heterogeneity in minority populations. Both the Latinx and Black populations tend to be included in one big group despite having different cultures, genetics, and socioeconomic factors. Over 60 million Hispanic people live in the US and more than 70% of them speak a language other than English at home. In fact, 24% do not speak any English. In this population, cancer is the leading cause of death, but both Black and Hispanic patients were underrepresented in clinical trials that led to cancer drug approvals. Research and recommendations that do not show diversity in data is not equitable.
Ethical challenges faced by big data relate to autonomy, equity, and privacy. For example, there is often a lack of clear informed consent around clinical trial recruitment in diverse patient populations. Using data that is not representative of all groups will exacerbate existing gaps and may lead to erroneous conclusions by algorithms. In the post-COVID pandemic era, telemedicine is fast becoming the norm rather than an exception. It does have its advantages, including timely access to care, convenience, and decreased cost to patients (no need to travel, less likely to need time off work, and less likely to need to get child care). Telemedicine could be used to increase clinical trial participation, given its advantages, however it has challenges as well. By definition, telemedicine is limited to persons with computer ownership and Dr. Segarra-Vasquez shows that this includes 85% of white people, 58% of Black people, and 57% of Latinx people. Even among those who own a computer, skill and literacy levels vary by race (Haynes et al., 2021: Addressing racial and ethnic diversity in telehealth).
Telemedicine is an advanced approach to healthcare delivery with enormous potential to bridge healthcare delivery gaps, especially for under-resourced and marginalized communities. However, while marginalized communities represent a target audience that could benefit significantly from this modern solution, little of the existing literature speaks to its acceptability, accessibility, and overall effectiveness in these communities. Language barriers are another challenge to telemedicine, especially given the shortage of interpreters who could serve as intermediaries between healthcare providers and patients of African, Caribbean, Hispanic/Latinx, or AAPI descent. One way to mitigate this challenge is to encourage hiring bilingual or multilingual clinicians. Further, to increase trust around the concept of telemedicine among patients from marginalized communities, efforts must be made to reassure patients on privacy and data security issues through the use of culturally tailored educational materials on telemedicine. As Dr. Barbara Segarra-Vazquez mentioned during her discussion, “Latinx people tend to be more trustworthy because they do not have the same oppressive and traumatic histories that parallels the history of Black Americans in the US.” Increasing BIPOC communities’ engagement in clinical trials and telemedicine will take intentional work not only to reduce barriers to accessibility but to build trust. Inclusion of ethnic diversity in big data studies supports justice, scientific reliability, and new discoveries.
To decrease and ultimately eliminate disparities in health outcomes and improve care, we need data. However, obtaining data will require patients’ trust. And, it’s not a patient’s job to trust systems, providers, etc. It’s the responsibility of systems and clinicians and researchers within the system to build trust. It is their job to make sure “we” are building a system that patients can trust to protect their data and information. While technology and innovation in healthcare have undergone a rapid evolution, the Privacy and Security Rules within the Health Insurance Portability and Accountability Act (HIPAA) have remained stagnant. HIPAA regulations and guidelines do not currently reflect the use of patient data through telemedicine and virtual clinical trials and must be updated.
Often, patients are right to be worried about their data as their rights are frequently violated. For example, patients have barriers to accessing their own health information and data. Additionally, there are concerns regarding a continued lack of clarity about how HIPAA applies in a mobile environment, virtual care, and telemedicine. Such questions as: how safe are devices used in collecting and storing data, who has access to those devices, what happens in the event of database breaches, etc. need to be addressed.
As rightly noted in one of the panel descriptions, electronic medical records and the data they provide are often at the center of discussions about data sharing, privacy, and consent. Those records are goldmines for companies digging for data that can be used for profit and commercialization. Underrepresented minorities are more often the subject of unconsented data sharing, but conversely, are frequently left out of the equation when data is used to make decisions about public health at the community and state levels. The co-chairs of the special session on Big Data and Health Equity brought together patient advocates, health care professionals, and other stakeholders as panelists for an exciting discussion of these topics.
Overall, these panels highlighted the inequities and gaps in research due to the lack of participation of marginalized communities. Solutions to these gaps need to address barriers to accessibility in clinical trials for several marginalized groups, the importance of addressing the lack of trust between communities of color and science, and the connection between patient data protection and the effectiveness of telemedicine.