An Interview with Dr. Karen Emmons and Dr. Bisola Ojikutu

Karen Emmons is a Professor of Social and Behavioral Science at the Harvard T.H. Chan School of Public Health. She is a behavioral scientist with a strong track record of funded research in community-based approaches to cancer prevention in a variety of settings that serve under-resourced communities, including low income housing and community health centers. She is the Multi-PI of the P50 Implementation Science Center for Cancer Control Equity, and the MPI of Harvard’s T32 Cancer Prevention Education Training Program. She currently serves as the Faculty Director of the Community Engagement Program for Harvard’s Clinical Translational Science Award. Dr. Emmons is Past-President of the Society of Behavioral Medicine, and a member of the National Academy of Medicine.

Bisola Ojikutu MD MPH FIDSA is an infectious disease specialist and health equity researcher who has dedicated her career to overcoming racial and ethnic disparities in HIV and now COVID-19. Dr. Ojikutu is an Associate Physician within the Division of Global Health Equity at Brigham and Women’s Hospital. She is also a faculty member within the Infectious Disease Divisions at Brigham and Women’s and Massachusetts General Hospitals. Dr. Ojikutu is an alumni of the Commonwealth Fund Fellowship in Minority Health Policy at Harvard University.

Susan Carney Lynch: Thank you, Dr. Emmons and Dr. Ojikutu for taking the time to speak with us today about building trust in COVID-19 vaccines in communities of color through community investment. I’d like to start out today by getting a sense of what the state of vaccine uptake is in communities of color and why there may be causes for hesitancy?

Bisola Ojikutu: I am an infectious disease physician and health equity researcher and I’m involved in the work that is being done locally to address vaccine uptake barriers, including increasing vaccine confidence within communities of color. I’ll start by saying that we have a lot more work to do to increase access. What's happening in most places is that there's been an increase in willingness to take COVID-19 vaccines. If you look at the most recent Pew Research Institute data, which is a national probability sample of individuals across the United States, about 61% of Black or African American individuals are willing to take the COVID-19 vaccines. That's a significant increase from last year around September when it was around 32%, so there's a willingness to take vaccines which is an important piece of the puzzle, but certainly not all the puzzle. I think the bigger issue is whether or not individuals in predominantly Black and Latinx communities actually have access to vaccines at the community level. Over the last couple of months I think there's been an effort to prioritize higher risk neighborhoods. In some instances, states and cities are actually prioritizing the people in those neighborhoods as well as streamlining access systems so that people who may not have access to the internet have higher touch ways of accessing vaccination. Multiple modalities are being used to increase access, including mass vaccination sites like we do here in Boston, mobile access, pop-up sites, as well as using door to door for those people who are unable to get out. Vaccines must be available outside of business hours to ensure access for those who cannot take time off from work. In addition, outreach needs to include languages that are appropriate for the population that we hope to reach. Another issue is that we have younger populations we need to reach and more media campaigns and novel engagement strategies must be developed. It's going to take some time to do this and to determine the best strategies. Frankly, we have a lot of work to do as our city (and our country) opens up, and many people remain unvaccinated.

Matt Nathan: Do you think the problem is inherently lack of access and ease of getting the vaccination in underserved communities, or a preponderance of suspicion and mistrust in the government based on historical examples of unethical scientific trials that occurred among the Black population? Is there a difference in avoidance or hesitancy reasons among different age groups of people of color?

Ojikutu: I think that the root cause of both access barriers and mistrust is structural racism. The systems that have been in place in this country, which have led to the mistrust, as well as the barriers to access that have been amplified regarding COVID vaccination have led to marginalization and disenfranchisement of communities of color. It is not one or the other and we need to stop overshadowing access barriers with overfocus on vaccine “hesitancy”. I think we need to look at the root cause and understand what's driving both problems. What we've seen across the country is mistrust as a normal response to adverse experiences with government, big pharma, research, academic institutions, and health care systems. These feelings of mistrust are not necessarily based in past misdeeds -- but current injustice that people are seeing in their own social networks and their communities. These experiences reinforce that our systems are not trustworthy. This is very true. But it is also very true that real access barriers to vaccination exist.

Lynch: Dr. Emmons, you and Dr. Ojikutu wrote the paper on trust and on community engagement and one of the themes of this paper was that the COVID-19 vaccine trials haven't included many people of color and that this has been a problem. Is this still an issue?

Karen Emmons: The concern was two-fold -- first, about overall representation, relative to the population, and second about representation reflecting burden of disease. There was a lot of work reaching out to communities and in the end recruitment focused largely on communities of color and achieved more diversity than is typically seen in clinical trials. However, even with that, people of color (and Blacks in particular) are underrepresented in the COVID vaccine trials relative to their share of the total U.S. population, and especially relative to disease burden. We shouldn’t overlook the effort put into this, but we would argue that it is the wrong kind of effort if we are, in general, going to increase diversity of participants in clinical research. The point that we've been trying to make is that the government has invested, really, really, heavily in these vaccines -- lots of public money has gone into their development. But we have invested very little in the communities that we need to help us ensure that we get this right, so that the vaccines will be effective in the entire population. In essence, our approach to the vaccine development has been that we should spend what it takes. Our approach to our marginalized communities that we need to participate is “you should engage with us because we have this trial and it’s important to us and to you, and we need you in it”. Essentially, the door to participation in the benefits of drug development are closed until it is time to test the drug, and then we pop in and say “okay come we need you”. My colleagues and I have received a number of calls from drug trial researchers asking for help to “get into the community”. Unfortunately, that's not the right way to think about this. These are not my communities that I somehow have a special key to. What opens doors is true engagement and investment over long periods of time that build trust. Communities deserve to be considered equal partners, and to see investment in their well-being. As Dr. Ojikutu said, we've really under-invested in these communities and then, when we have a need, we show up and expect the community to come forward and meet that need. But we don’t even consider using our resources to help those communities with their economic issues, or their housing issues, or their transportation issues, or to address the many structural factors that deter their progress. Instead, we just contact the communities when we're ready, we go to the pastors, we go to the community organizations and we ask them to help us convince their members to participate in a study. Our point is really about shifting away from community outreach and engagement to community investment, and building a two-way strategy which would provide research with significant benefit, but that would also provide communities with long-term benefit as well.

Nathan: You talked about the very significant issue of healthcare disparity among communities and it's going to be a marathon to fix that not a sprint. You included the under-investment, structural racism, and the intentional and unintentional segregation of healthcare that can result in differences in life spans from one zip code across the street to another. We are in a sprint right now with vaccinations trying to develop as much immunity as possible to preclude some sort of horrible variant that comes around the corner. Who should lead this effort at the community/national level and what would your advice be to them? Is there something we're not doing now, either as a nation or as a community, to create resonance with populations that deservedly may be hesitant?

Ojikutu: If we want to address racial and ethnic disparities and achieve equity we must redistribute resources and invest in communities where there has been chronic disinvestment. Importantly, it also means shifting decision-making power. By that I mean that communities of color need to be leading the redistribution of resources. They need to be the decision makers in regards to distributing any intervention, including COVID-19 vaccines. I think that's the part of addressing disparities that's chronically been missing. Racial and ethnic disparities may incrementally narrow, but they don’t go away because communities are rarely given the power, the capacity and the resources to solve their own problems. If we want to dismantle the structures that are driving the disparities and come closer to achieving health equity, then this dynamic needs to change. When communities of color feel a sense of ownership and are truly in charge of the process this will go a long way towards increasing confidence and improving uptake.

Emmons: So if we were in charge, what would the world look like? Well, for starters, investment of public funds into drug development would come with requirements for the companies receiving those funds to invest, not just engage, in local communities. The U.S. government has invested billions and billions of dollars in the development of COVID vaccines and other drugs, which will create both infrastructure for future drug development and profit for big pharma. It is not unreasonable to expect that in turn big pharma would reinvest in communities. What if the government made a condition of participation to invest public dollars into the development of private sector products and required ways in which money would be spent that would support more marginalized communities? This is a major blind spot for government investment -- we are not paying attention to the way in which we could leverage public dollars to support and develop marginalized communities. Greater community investment requirements should be applied beyond finding people of color to be in trials. And you might be thinking of this as a one-way benefit for communities, but really, the current model has lots of missed opportunities for pharma. We would argue that a community investment model would create two-way benefit, for both marginalized communities and pharma. For example, through true community investment, pharma could expand markets for drugs that are being tested, and they could identify other products they might develop. They could build a diverse employee pipeline, and increase the trust in their products. Although pharma may provide some resources to communities through their “corporate social responsibility” policies, these approaches usually don't get at the underlying structures and economic drivers of how resources are provided, and that holds marginalized communities in place. If we are going to invest so much in pharma, and allow it to retain the profits from that investment, it seems only right that we should consider investing in the communities that we need to participate in order to create vaccines and other products that provide a public good.

Lynch: As we think about health education, and where we are with the need for vaccine uptake, as you mentioned, Dr. Ojikutu, in the younger community what can we do to really get engaged investment and increase the success of health education on vaccine uptake?

Ojikutu: People have been critical about health communication throughout the pandemic and rightly so. There has been a wealth of misinformation and disinformation out there online and in the media. Going forward I think that we need to think very clearly about what the messages are and who the messengers should be. We need to be thinking carefully about parental vaccine hesitancy and how those beliefs might also be influenced by previous negative experiences within the health care system. I think that we, as people in academia and public health, need to be more clear and transparent about what we know and what we don’t know. Language concordance is also important as is recognizing and adjusting to the health and scientific literacy level of the diverse audiences that we are trying to reach. Certainly, what may resonate with the younger populations that we are currently trying to reach is not going to resonate with somebody who's older and the trusted messengers may not be the same. For younger populations we have models and strategies for how to reach them that we have used successfully for other diseases. I don’t believe that we are adequately using our lessons learned and we should.

Emmons: Bisola is so right. Our approach to COVID communications has been to expect people to do what we say today, regardless of what we said yesterday or last week. But this pandemic is unprecedented and we're making science in real time, which is so unusual for us, and for the public. As our knowledge has changed, we have done a pretty lousy job of explaining to people why you had to do one thing before and now you shouldn’t do that, and why you couldn't do something else before but now you can. Without a clear explanation of the reasons behind changing recommendations, people start to throw their hands up and reject what doesn’t make sense to them. You can get ahead of this in part by engaging people and trying to understand their concerns and worries, and then addressing those issues in clear and straightforward messages. It's the same problem that we have when we are developing clinical trials. We design the research by ourselves in our labs, we write the IRB applications in our offices, we get human subjects approval, and then we go to the community and we say “This is what we're going to do, come on let's do it!”. We haven't given them an opportunity to provide input into what parts of the study are concerning to them, or what changes might make them more willing to participate. Essentially, we think that we hold the key or the answer to the problem, and people should just respond to what we tell them to do. We have shown over and over again that this approach doesn't work. And further, it creates these fissures that in the case of COVID have allowed disinformation to run rampant.

Nathan: Dr. Ojikutu if the wrong people are in power or in charge influencing distribution and investment of healthcare resources, who should be in those roles?

Ojikutu: Let's just look at some of our systems. We can look at research and/or public health practice. The individuals who are often awarded large grants are those who have a long track record or an institutional history of managing similar grants. They may have proven to be fiscally sound over time. This process may leave out smaller community-based entities or individuals with less experience and less of a track record. Although the community member or the smaller organization may know more about the issues in their community and may have more novel ideas about how to solve those issues they may be left out of the process. So we need to figure out how to bring more diverse individuals and smaller organizations to the table and work them into the system, such that they can be given funding directly to do the work in their own communities. I think that we need to figure out a way to assume some of the risks to bring different, nontraditional partners, whether they be faith-based leaders, or stakeholders from smaller organizations or others to the table. Community members who actually understand the norms, the beliefs, the underlying drivers of problems and the barriers in their own communities must be included in the process. Otherwise, the resources and capacity will always remain within the same organizations and institutions.

Emmons: The idea of public-private partnerships to resolve some of these issues is an interesting one. We would argue that there may be merit in these approaches, but it totally depends on how these are being handled. We are currently starting to see a lot of these partnerships pop up, but in so many of them, there is no community voice at the table. It’s the universities, pharma, and government sitting around the table, and seemingly less effort put into figuring out what the community voice should be, and how to bring different players to the table. There is a sincere interest in addressing these concerns, but we continue to use the same strategies that haven’t worked in the past. There's no outside voice, no sharing of power, no sharing of resources. We're just talking to ourselves again and again. The question for us is how do we approach this differently.

Lynch: Thank you and I’ll close with a final question for you, Dr. Emmons. Could you share with us some of the work that you're doing with the Harvard Catalyst Community Engagement Program and how that relates to the topic we're talking about today?

Emmons: One of the efforts that we are currently developing to provide more community voice into research is the Community Coalition for Equity in Research. It was developed out of our frustration with this issue where researchers put their science together, they get it all locked down, and then they try to get community involved. To us, that’s backwards. We developed the Community Coalition to provide a standing resource for researchers to get community input into their research, ideally as they are designing it. The coalition members are from across the Commonwealth, and bring significant diversity in experience, expertise, and perspectives. The Coalition is designed in part to help respond to what I hear so often from researchers -- that they wish they could get community input but they don’t know how. This is our way to lower that bar, and make it both the easy thing and the right thing to get community input. Hopefully this approach will not only affect the study that we are considering, but also the way researchers think about their science overall, and enable them to build their own community partnerships in truly engaged and authentic ways.

Lynch: Well, thank you very much Dr. Emmons and Dr. Ojikutu for your time and for your contributions on this important topic.

About the Authors:

Matt Nathan, M.D., is a Harvard ALI Senior Fellow, previously the 37th Surgeon General of the Navy and most recently a Senior Vice President for a large tertiary care healthcare system.

Susan Carney Lynch, Dr.PH, is a Harvard ALI Senior Fellow and Editor-in-Chief of the Social Impact Review. Prior to ALI, Susan spent 20 years at the United States Department of Justice as Senior Counsel for Elder Justice, where she led federal civil long-term care quality prosecutions nationwide and elder justice policy work. Susan has also had adjunct faculty appointments teaching health, law, and policy at law and public health schools for the past two decades.

This interview has been edited for length and clarity.