Vital Research on Health Inequities Moves Forward During Pandemic Challenges
Like no other event in recent history, the COVID-19 pandemic of 2020 has forced upon the world a new awareness of how dependent we all are upon each other for our mutual health and well-being. We have learned we should keep our distance and wear our masks, avoid going into crowded indoor spaces, and wash our hands--not just to protect ourselves, but also to protect those around us. We have learned that the actions of a single person can keep a whole community safe, or put it at dire risk.
We have also learned, however, that while it is relatively simple for the wealthier and more privileged in the United States to practice social distancing and isolation, it has not been as easy for the less privileged in our society. For people of color across the US, and especially for Blacks, Latinx and Native American communities living in poverty, the circumstances of their lives make keeping distant from others impractical. They often travel to work on public transportation. They often work shoulder to shoulder in worksites with poor ventilation. They often cannot afford good protective equipment, and they may lack access to the education on best practices to stay safe. Because many people of color live in historically marginalized communities that lack access to good food and health care, they often have pre-existing health conditions, including obesity, diabetes, hypertension, and kidney disease, that put them at special risk. As a result, black and brown populations living in poverty have suffered much greater rates of illness and death from the pandemic for their share of the population than the whiter and wealthier populations in the US.
The pandemic has highlighted the inequalities in health outcomes for African American and other communities of color, but it didn’t create them: they have existed for decades as the social legacy of racism, segregation and other forms of discrimination.
This is why the Johns Hopkins Center for Health Equity exists. Since its inception in 2010, the dedicated researchers and clinicians at the Center have focused on understanding how social circumstances impact health, and on working to address the negative impacts of those circumstances.
So what happens when a global pandemic that impacts poor communities of color the hardest disrupts research into solving exactly those types of inequitable health outcomes?
The work may change, but it does not stop.
The pandemic has forced many aspects of Center research projects to stop or be modified to keep teams and participants safe. Wherever possible, project teams have continued with tasks that didn’t require in-person contact. They are also with dealing with the challenges of delayed data collections, potentially less reliable data, and the risk of increased disease exposure and livelihood stressors to already-vulnerable patients. To address this, each team has modified research protocols where possible and in some cases, started new activities to enhance the research outcomes.
We asked colleagues from two of the Center’s research teams to share recent experiences about the ways COVID-19 is impacting their ongoing work. These multi-year projects focus on health improvements in ethnic minority, low income, and rural populations in Maryland and Pennsylvania.
The following personal reflections offer a unique glimpse into the behind-the-scenes challenges and decision-making by public health research teams to keep the research moving forward during the COVID-19 pandemic.
Deidra Crews, MD, ScM. Co-Principal Investigator of 5 Plus Nuts + Beans for Kidneys
Jill Marsteller, PhD, MPP. Co-Principal Investigator of RICHLife
Gideon Avornu, MS. Research Program Manager of RICHLife
Mary Ann Stephens, PhD. Research Program Manager of 5 Plus Nuts + Beans for Kidneys
HAS THE COVID-19 PANDEMIC AFFECTED YOUR EXISTING RESEARCH INTERVENTION?
Gideon Avornu, Research Program Manager of RICHLife: Yes, but to date, research activities continue to go on smoothly despite the pandemic. The RICH LIFE staff began working remotely in mid-March prior to the stay-at-home order announced by the Governor of Maryland. Luckily, we were able to organize logistical requirements; team members were given a laptop to work from home and headsets to facilitate the patient interviews. Apart from occasional internet connectivity issues, our transition from the office to working remotely went well. The day-to-day research operations continue as usual through telephone and video conference calls.
Our in-field team of Care Managers and Community Health Workers halted in-person visits due to the physical distancing restrictions. Instead, they transitioned to telephone visits and continue to engage with patients.
Deidra Crews, Co-Principal Investigator of 5 Plus Nuts + Beans for Kidneys: Yes. The physical distancing rules, and the policies put forward by Johns Hopkins University, have meant that we could no longer conduct in-person research participant visits. This represented a big disruption for our study, as we had to stop bringing participants in for blood and urine tests, and also had to stop weekly grocery deliveries to the participants. These were core components of the study, and we’ve had to develop some new protocols and goals to keep the research going.
Mary Ann Stephens, Research Program Manager of 5 Plus Nuts + Beans for Kidneys: Yes. We’ve had to stop any new enrollments to the research study. This is because participants in the early stages of the intervention need close supervision while working to change their eating patterns; the physical distancing restrictions mean we couldn’t safely provide that monitoring. For those participants in the later stage of the study, we continue with telephone calls and some limited data collection, but we may have to delay in-person collecting data until the University determines it is safe to start seeing participants again. This will likely delay our ability to analyze how well the intervention worked.
Five Plus Nuts and Beans for Kidneys is seeing whether eating meals rich in fruits, vegetables, whole grains, nuts, beans, and lean meats can lower blood pressure and protect the kidneys among low-income African Americans with hypertension and early chronic kidney disease.
RICHLife (Reducing Inequities in Care of Hypertension: Lifestyle Improvement for Everyone) is a research study dedicated to exploring new approaches to high blood pressure and heart disease management among ethnic minority, low income, and rural populations.
HAVE YOU, OR WILL YOU, MAKE MODIFICATIONS TO THE RESEARCH PROJECT?
Gideon Avornu, Research Program Manager of RICHLife: Yes, but the pragmatic nature of the RICH LIFE project design allows for some modifications to address real-world issues. RICH LIFE patients are already a vulnerable group due to their underlying health conditions. Many of our patients are also older and experiencing isolation and other social determinants of health that the COVID-19 outbreak may worsen. To address this, the RICH LIFE team developed a COVID-19 patient needs assessment as an additional step in the protocol to check-in on the well-being and needs of our participants during the pandemic.
We also conducted two well-attended Health Equity Learning Network sessions in April 2020 to address the care of socially at-risk populations and we provided several resources to more than 100 attendees.
Deidra Crews, Co-Principal Investigator of 5 Plus Nuts + Beans for Kidneys: Yes. We are likely going to modify our protocol for the study to account for the impact of the pandemic. We may need to alter our enrollment plans since we may not have enough time (in our funding cycle) to complete full recruitment.
Mary Ann Stephens, Research Program Manager of 5 Plus Nuts + Beans for Kidneys: Yes. We will be seeking guidance from the external monitoring board and the community advisory board members on the dietary modifications feature of the study intervention that might be impacted by the disruptions in the community caused by COVID-19.
HOW HAS YOUR DAY-TO-DAY PROFESSIONAL ROLE CHANGED AS A RESULT OF COVID-19-RELATED IMPACTS?
Jill Marsteller, Co-Principal Investigator of RICHLife: My personal role as a researcher and educator has expanded to include more mentoring-type work. I now regularly check in on students and junior colleagues who are facing challenging times trying to work from home with young children, feeling isolated as single people, facing stoppages in their research projects, and trying to accommodate new teaching modalities.
Deidra Crews, Co-Principal Investigator of 5 Plus Nuts + Beans for Kidneys: I have been increasingly engaged in advocacy efforts surrounding policies that could support socially disadvantaged individuals during this pandemic. I have given talks to multiple audiences, both focused on people with kidney disease as well as more broadly addressing racial/ethnic minorities and other socially disadvantaged groups.
Mary Ann Stephens, Research Program Manager of 5 Plus Nuts + Beans for Kidneys: I had recently started as a new staff member on the research project right about the time the University announced we needed to stop in-person research visits due to COVID-19. So my work on the project has not yet been what I anticipated when I was hired. I was really looking forward to working on research projects based in the communities where people live and go about their everyday lives, and where people can practice new skills that could help change their thinking or behaviors toward improving their health. For now, I will have to be patient for those opportunities to interact and engage with my new coworkers, our study participants, and community advisory board members.
HOW HAS THE PANDEMIC AFFECTED YOUR PROFESSIONAL OR PERSONAL PERSPECTIVE?
“There is no doubt that the COVID-19 pandemic has left an indelible mark on my career goals and aspirations. Speaking as a health care leadership enthusiast, the effects of the pandemic have emphasized the importance of access to affordable care for the least privileged in our society. It has emphasized the need to implement robust preventative health programs in middle to low-income settings.”
Gideon Avornu, MS. Research Program Manager of RICHLife:,
Jill Marsteller, PhD, MPP, Co-Principal Investigator of RICHLife.
“The awareness of my privilege in having a job that can be performed from home, a home large enough to separate comfortably from family if needed, and the health of my family members has been brought into even stronger contrast with the realities that many of our RICH LIFE participants face. It has served to only increase the urgency of our work in my heart and mind.”
HOW DO YOU COMMUNICATE TO PEOPLE PARTICIPATING IN YOUR RESEARCH ABOUT ANY CHANGES TO THE PROTOCOL?
Gideon Avornu, Research Program Manager of RICHLife: Our dedicated Research Program Assistants (RPAs) are truly the “front-line” staff who communicate any delays or study changes to patients. For example, due to the COVID-19 outbreak, all of the RICH LIFE staff had to work from home. We anticipated a delay in the processing of participant payments. Thus, the RPAs notified patients to expect delays in payment after completing their surveys. Most of the patients were very understanding. We also relay changes to patients through our committed Care Managers and Community Health Workers who are currently notifying patients about the additional questionnaire to assess patients’ needs during the pandemic.
Deidra Crews, Co-Principal Investigator of 5 Plus Nuts + Beans for Kidneys: Our research team and clinicians have informed study participants that, out of concern for their safety and the safety of our staff, we are delaying in-person visits. We also tell them that this is in accord with state and institutional guidelines during the pandemic.
WHAT ARE THE POSSIBLE LONG-TERM IMPACTS ON THE OUTCOMES OF YOUR RESEARCH PROJECT?
Gideon Avornu, Research Program Manager of RICHLife: Patients enrolled in RICH LIFE have uncontrolled blood pressure. Blood pressure outcomes data are collected from the electronic medical records of our five health systems. Due to the transition to virtual medical visits, a serious threat to the study data collection is that we may not be able to obtain the clinical blood pressure measurements for our patients within the period of the pandemic.
The COVID-19 outbreak is placing additional strain on the workflows of field staff. For example, some are being asked to help screen and triage patients within their health system. Although some of our patients have finished the intervention, it is possible that the remaining patients at this health system may not get the desired amount of the intervention due to competing priorities.
However, the pandemic has presented a unique opportunity to build upon the Center’s existing research to eliminate health disparities. The Center has applied to a PCORI grant to further address health disparities among the RICH LIFE patient population.
Deidra Crews, Co-Principal Investigator of 5 Plus Nuts + Beans for Kidneys: If we are not able to recruit additional participants into our study and achieve our original target of 150 participants, we may not have adequate numbers of participants to allow us to answer the original research question posed by our study–which is whether delivering nutritional advice to adopt the Dietary Approaches to Stop Hypertension diet and $30 per week worth of fruits and vegetables, followed by tailored dietitian advice which considers the home food environment, will reduce kidney damage and blood pressure in socioeconomically disadvantaged African Americans with hypertension and chronic kidney disease.
A positive potential impact is that, by nature of the study's focus, we may still be able to capture the experiences of a socially disadvantaged population during this pandemic, and that may be informative for future efforts to support such populations.
Mary Ann Stephens, Research Program Manager of 5 Plus Nuts + Beans for Kidneys: During this halt in most of our research activities, we have been able to move on to a related project that relies on telephone-based interviews with participants who had completed our study. Through this new project, we want to learn about what helped and what hindered the participants as they worked to make any dietary changes that we presented to them during the study. By learning more about the participants’ experiences, we hope to design interventions that can be more easily integrated and sustained in the communities.
“The pandemic has fueled my desire to also pursue innovative public health programs that would benefit the most vulnerable people among us. If everyone has access to care and attend regular primary care appointments, it is possible that they might have better health and in turn, might be able to mitigate the effects of novel threats such as the new coronavirus. As the old saying goes, ‘prevention is better than cure’. ”
NEW OPPORTUNITIES
The COVID-19 pandemic has clarified the kinds of inequities in social circumstance and health that the Center for Health Equity was created to address. While COVID-19 has forced researchers to make adjustments, the work continues, and the pandemic has provided some unexpected opportunities to track the experience of the disadvantaged populations the Center exists to serve. Despite the many obstacles, our researchers are also embracing positive opportunities, including new COVID-19-related funding. Center leaders are also leveraging the heightened media attention and public awareness to push for better policies to support health equity for all communities.
For more perspective on how COVID-19 is impacting the Center’s overarching health equity mission, be sure to read the Director’s Editorial by Dr. Lisa Cooper released this month.
OTHER LEARNING RESOURCES:
Director’s Editorial about COVID-19 and Center for Health Equity
Learn more about ongoing progress from the RICHLIFE research team
Learn more about ongoing progress from the 5 Plus Nuts + Beans for Kidneys