Maddie Turner
Rice University
Houston (29.7° N, 95.3° W)

featuring Jonathan Jackson, founding director, CARE Research Center, Massachusetts General Hospital, Boston (42.3° N, 71.0° W)

Jonathan Jackson is a cognitive neuroscientist at Harvard Medical School and Massachusetts General Hospital, as well as the founder and director of the Community Access, Recruitment, and Engagement (CARE) Research Center at Massachusetts General. During my conversation with Jonathan, we discussed his passion for neuroscience, his decision to found the CARE Research Center, and the many twists and turns of his unconventional career path.

Jonathan graduated from Rice University in 2007 where he majored in Cognitive Science. While he came to Rice knowing that he was interested in studying the brain, he didn’t have the opportunity to explore either cognitive science or neuroscience in high school. It wasn’t until his junior year of college that the metaphorical lightbulb went off, as he was studying abroad at the University of Otago in New Zealand. “One of my classes was on neurodegeneration. When I saw a picture of a normal brain next to an Alzheimer’s brain on the slide projector, it hit me like a bolt of lightning. I knew that that was the problem I wanted to solve.” After returning to Rice the following semester Jonathan was able to work with a psychology professor studying aging and Alzheimer’s disease, and decided to pursue a PhD in Psychological and Brain Sciences at Washington University in St. Louis. “It really seemed like a problem of justice,” he told me, explaining his fascination with Alzheimer’s and neurodegenerative brain diseases. “Somebody can make it to 70 or 80 and lose the one thing that is more valuable than anything else, which is their memories and their sense of identity.”

Justice has remained a key element throughout Jonathan’s career in academia and healthcare. After earning his PhD, he completed a postdoctoral fellowship in Neuroscience at Brandeis University, before moving on to his position at Harvard Medical School and Massachusetts General. He discovered that he had a love for teaching during his time in graduate school, and he channeled this passion into community engagement, giving talks that explained science to “non-scientists” in understandable terms. “We are gatekeeping our science,” Jonathan said in our conversation. “You can’t even read the papers that we publish without paying an arm and a leg. Some of that’s not really our fault as scientists but it is part of the system we operate in and support. What led to my career shift is that science should not be for the scientists; it should be for everybody.” Since 2014, Jonathan estimates that he has given around 400 talks to his community explaining the biology behind Alzheimer’s disease and the steps to developing a cure. His passion for expanding science and healthcare accessibility ultimately led to his founding of the CARE Research Center, which seeks to expand and diversify clinical trial recruitment through community engagement.

The CARE Research Center has four main goals: health disparities research; community funding; direct community engagement; and advocacy through policymaking. Such a broad mission requires a lot of delegation and collaboration, and Jonathan credits his team with handling much of the hands-on work as he works to bring these disparate spheres together. Some of his daily responsibilities as director of the research center include writing papers and grants to secure funding, holding meetings with foundation representatives, and creating policy guidance for state and federal governments that improve equity in intersectional communities. Jonathan explained that especially during the current moment where there is renewed focus on Black Lives Matter movement, he wants to use his platform to give voice to groups that are typically marginalized or disenfranchised. His team recently held an event called Rest and Reflect, which aimed to give trans-identifying people of color a space to process and express what they are feeling about everything going on in the world today. 

What struck me most about my interview with Jonathan was that in every aspect of his career, he strives to expand the accessibility of science and healthcare to a wider and more diverse group of participants. Historically, clinical trials have always been conducted with predominantly white, predominantly male subjects, which is harmful not only for minority groups but for the credibility of medicine and the health of our world at large. “If you run [a trial] on people who look the same, and then when you try to sell that medicine out in the world, it will have a very different level of effectiveness than you think it has,” Jonathan explained. Expanding access to new treatments and actively seeking out participation in clinical trials from underrepresented groups makes us better scientists, and better equips us to serve the people around us. 

I also found it surprising that when starting out, Jonathan never would have predicted the path that his career would take. Originally, he planned to delve more deeply into a specific field of neuroscience called attentional control–which studies the ability of patients to maintain sustained attention–and how it relates to the onset of Alzheimer’s disease. Instead, over and over he found himself pushed into health disparities research, a result of “well-meaning but misguided racism.” He described how frustrating it was that people expected him to go into the field of health disparities despite having no experience or initial interest in the topic. However, as time went on he realized how much the research in this area was lacking, and saw concretely how he could make a difference. “I thought about it for several months and realized that I could have the chance to do some of this work the right way. And if I was going to do disparities work I would do it with high-quality science and I would do it on my own terms.” Thanks to support from Massachusetts General, as well as some entrepreneurial spirit of his own, he was able to start the CARE Research Center, a very unconventional and risky move for a junior researcher who is not yet established in a particular field. For Jonathan, the risk paid off. “Although the moves and the jumps that I’ve taken have been very non-traditional, this was the best way to support the science and the communities that are so often left out of these conversations.” 

Looking to the future, Jonathan explained that technology is rapidly changing the way that we conduct research and practice medicine. Clinical trial recruiting has become much more centralized and corporate, increasing efficiency but often overlooking patients from marginalized communities, decreasing the heterogeneity of trial participants as a result. In medicine (and especially during the era of Covid-19), tele-health is on the rise as a faster and more convenient option for doctor-to-patient interactions. However, this platform privileges those with good internet and access to technology; communities without widespread internet access will be left behind. Although technology has the potential to improve healthcare, Jonathan says that we must remember it is a double-edged sword: “Bringing technology into any sort of transaction conversation, process, or model only serves to amplify the biases that you are carrying with you. If you have the tiniest bias towards working with white people, for example, and you build a technology to help you with your process, you cannot expect technology to eliminate that bias. It will instead amplify it.” Technology will not solve any problems for us: as a product of our society, it inherits our weaknesses as well as our strengths. In order to use it effectively we must constantly strive to amplify voices that are traditionally silenced.

Jonathan’s advice for undergraduate students looking to get involved in science and healthcare, especially those looking to go into independent research, is to embrace the entrepreneurial spirit. While he wouldn’t necessarily recommend his own career path to students, he acknowledged that “every scientist has to be a little bit business savvy.” The first half of his career, a very traditional progression of PhD to postdoctoral fellowship, gave him the extensive knowledge and research experience required to found and support the CARE Research Center despite not yet being a full-fledged professor. Jonathan wouldn’t have been able to begin this venture without support from colleagues at Massachusetts General, but had he shied away from taking a step off the beaten path of academia, the idea would have never come to fruition in the first place. His passion for neuroscience, commitment to science accessibility and community engagement, determination to conduct credible research, and entrepreneurial hustle all coalesced to give him a unique perspective and skill set to tackle the problems of science and healthcare accessibility in the research community.

Highlights from the interview:

Can you tell me a little bit about yourself and when you first envisioned yourself going into the healthcare field and academia?

When I was accepted to Rice University, I selected cognitive science as one of my academic interests, not really knowing what it was. By the time I formally declared my major in my freshman year, I knew that I wanted to study neuroscience and the brain, and I wanted to help people. What really set my current path was when I studied abroad in my junior year at the University of Otago in New Zealand. One of my classes was on neurodegeneration. When I saw a picture of a normal brain next to an Alzheimer’s brain on the slide projector, it hit me like a bolt of lightning. I knew that that was the problem I wanted to solve. In my senior year, Rice brought in its first professor into the psychology department who studied aging and Alzheimer’s disease. I worked very closely with her. Then, I went to the graduate school in St. Louis where I really started studying the early detection of Alzheimer’s disease. Next, I did a post-doc at Brandeis University for a couple of years and then moved on to Massachusetts General Hospital where I did a post-doc for one year and then joined the faculty as an instructor. 

Do you enjoy making science more accessible for people that are in science? We cut off science from people assuming that they won’t be able to understand it, but do you think that’s not the case, we just need to work on communication?

I’ve given so many talks to community audiences or even professionals that don’t have scientific training. What I learned was exactly what you said, we are gatekeeping our science. You can’t even read the papers that we publish without paying an arm and a leg. Some of that’s not really our fault as scientists but it is part of the system we operate in and support. What led to my career shift is that science should not just be for the scientists; it should be for everybody. We need to do a better job of communicating and explaining. We also need to do better work about empowering non-professional scientists to be good at science. We should teach and empower individuals to do everyday science at home and in their communities. Doing that, we can improve the quality of our work by making sure that it is relevant to the experiences and needs of the communities. 

What led you to found the CARE Research Center? Was it difficult to transition from strictly academia to entrepreneurship?

Any scientist that ends up becoming an independent researcher has to embrace a little bit of the entrepreneurial spirit. I’m not a business major, I’m not strongly interested or invested in the business world. My area of expertise was attentional control, which is the ability to monitor how somebody’s paying attention or not and whether that is related to their chances of developing Alzheimer’s disease. I tried to bring that to my group but they kept repeatedly asking me why I don’t do disparities work; why I don’t start to look at risk factors for black people versus white people.  So, I reluctantly embraced the disparities research. It was not something that I wanted to do, I was not interested at all. Over time, I realized that the way the [disparities] work was being done within this group was just bad science. They didn’t have a good appreciation of how these constructs were measured or how to incorporate them into a model. If I stayed in this group and did disparities work, my career was going to blow up. If I tried to push the attentional control research, I would get no support or funding. At that point, I realized that I couldn’t stay there. I had to do something else. I thought about it for several months and realized that I could have the chance to do some of this work the right way. And if I was going to do disparities work I would do it with high-quality science and I would do it on my own terms. So, I started my own research center. I was lucky enough to get some support from the Massachusetts General Hospital to start the center, but it was not a smart idea. Usually if you’re going to start a research center, it’s because you’re a full professor in a particular field and you are world-renowned for a specific topic. Instead, I decided to do it as a junior scientist, not having really done this work but knowing what needed to be done. I set off to start a new sub-field of science. That was fairly risky, but now I have a better and broader ability to do good work than I previously did. Although the moves and the jumps that I’ve taken have been very non-traditional, this was the best way to support the science and the communities that are so often left out of these conversations, research, and the therapeutic benefits for something like Alzheimer’s.

Could you talk about  your day to day responsibilities at the CARE Research Center?

I’m the executive director of the CARE Research Center. Thus, I don’t get to do as much science as I want to in any given week. Most of my duties are administrative. I have a small staff of about 10. I don’t only have junior scientists in my group. I also have administrative staff, a program manager and a staff assistant. We also have community organizers. We have a board of trustees that we have to answer to. My main day to day job is to bring in money to keep the center open. In any given week, I have six to seven meetings a day about advising, consulting, or collaborating with researchers all over the world for getting people into research trials, keeping people in research trials, or thinking about diversity in our work. I also give talks to colleagues about the work I do. The way that we are doing clinical trials and curing diseases is changing. Instead of a clinical trial being conducted at one site or maybe five sites where every site has to run a clinical trial, there are these franchises that are owned and operated individually but all do the same sets of work. On the one hand, this makes running clinical trials more efficient; on the other hand, it makes it more centralized, which may introduce some problems later. So, much of my day-to-day work involves working with these large clinical trial networks to bring back some of the local flavor because that is really necessary for the trial to succeed. I’m also writing papers and grants. I help different organizations learn to be consciously anti-racist and allow themselves to be publicly accountable for that work.

What really exciting about CARE is that even though we are a research center, we do four sets of things. We do research, community work, policy work, and direct advocacy work. We work with local, state, and national governments to develop white papers and policies to help them understand how to be more equitable. Last month, for example, I was working with the Attorney General’s Office in Massachusetts about environmental justice, thinking about how pollution disproportionately affects black lives.

I also wanted talk about the disparities in the clinical trials, specifically the way the whole system is changing and becoming more centralized. Is that a problem that’s going to get worse? Or is there a risk that more people will fall through the cracks?

If people are not careful, and they only prioritize efficiency at all costs, which is what corporations do, then marginalized groups, minority groups, will definitely slip through the cracks. What I am trying to do with the structure is to have adequate representation. If you run a trial on people who look the same, and then when you try to sell that medicine out in the world, it will have a very different level of effectiveness than you think it has. So, it’s a good business practice to diversify the clinical trials. And so far, most of these new clinical trial networks have been responsive to that.

What advice would you give to students who want to get into healthcare advocacy work to actively include those disenfranchised groups? What is the best way to start making that change as they’re moving up?

Make sure that as you move forward, no matter what you look like, no matter what background you came from, you have power and privilege. Even if you are new or young, it is your duty and responsibility to bring others up with you. So, anytime you offer an opportunity, anytime you look for a collaborator, make sure that you’re looking for those voices that are usually silenced. Look for the choices that allow you to work with those voices that are usually missing from this space. Usually, you have to look for them. It’s not that they’re not there, it’s not that they’re not as talented as the other voices you’ll hear, but they’re made to be quieter. So, being very intentional about the spaces that you enter is the best way to center the groups that are more likely to have a tougher time than you.

Could you talk a little bit about how evolving technology is shaping both healthcare and advocacy work as we move forward? Do you think it is changing?

This is one of those things where we have to acknowledge that technology is just a double-edged sword. There are many aspects of technology that are good and that make the work easier, but we have to get out of the mindset of thinking that technology will solve the problems that we have created. Bringing technology into any sort of transaction, conversation, process, or model only serves to amplify the biases that you are carrying with you. If you have the tiniest bias towards working with white people, for example, and you build a technology to help you with your process, you cannot expect technology to eliminate that bias. It will instead amplify it. For example, in the medical space, with the COVID-19  pandemic, many providers are turning to telemedicine for the first time. That has made it much easier for many people to keep their appointments without worrying about taking off time from work. However, telemedicine is really good for people who have reliable internet access and can afford to take an hour out of their day. So, we have to keep in mind that using technology can make some parts of the work easier but we are building more barriers to healthcare by demanding that people have access to this technology. Technology can make things easier, but without making sure that everybody can access and really use that technology, we’re just going to make the problem worse for people who need the most help. 

Is there anything else that you would like to mention?

There’s one thing that I wanted to say about my time at Rice. I always remember and really appreciate the help that I got from the student financial services, people in the admissions department, my college masters, the RAs, and the dean of students during my time at Rice. I would absolutely not be where I am today without their support and it is so important to me that I wanted to share that here. 

Interview excerpts have been lightly edited for clarity and readability and approved by the interviewee. This article only aims to share personal opinions and learnings and does not constitute the interviewee’s current or former employer(s)’ position on any of the topics discussed.