NINDS's Building Up the Nerve

S5E3: Collaborating with Partners in Research

• NINDS • Season 5 • Episode 3

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The fifth Season of the National Institute of Neurological Disorders and Stroke’s Building Up the Nerve podcast, where we help you strengthen your science communication skills with tools and advice to use throughout your career. We know that navigating your career can be daunting, but we're here to help—it's our job!

In the third episode of the season, we talk about Collaborating with Partners in Research, focusing on how to best learn from and include the perspectives of non-scientists and persons with lived experience in research and science.

Featuring Alice S. Chen-Plotkin, MD, Professor at the University of Pennsylvania, Director of the MIND Initiative, and Neurologist at Hospital of the University of Pennsylvania; Sonia Vallabh, PhD, Senior Group Leader at Broad Institute of MIT and Harvard, and Assistant Professor of Neurology at Massachusetts General Hospital, and Olajide Williams, MD, Vice Dean of Community Health & Professor at Columbia University Vagelos College of Physicians & Surgeons. 

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Transcript available at http://ninds.buzzsprout.com/.

Lauren Ullrich:

Welcome to Season 5 of the National Institute of Neurological Disorders and Stroke's Building Up the Nerve, where we help you strengthen your science communication skills with tools and advice to use throughout your career. We know that navigating your career can be daunting, but we're here to help— it's our job![music fades] Hi, I'm Lauren Ullrich, Section Chief for Career Advancement in the Office of Programs to Enhance the Neuroscience Workforce, also known as OPEN, at NINDS.

Marguerite Matthews:

And I'm Marguerite Matthews, Section Chief for Career Preparation in OPEN, and we're your hosts today.

Lauren Ullrich:

Last episode, we discussed thriving in team science. Today, we're going to talk about collaborating with partners in research, which will focus on how to learn from and include in our research the perspectives of non-scientists such as clinicians, persons with lived experience, and the broader community.[music] Joining us are Dr. Alice Chen-Plotkin, Dr. Sonia Vallabh, and Dr. Olajide Williams. So let's start with introductions.

Alice Chen-Plotkin:

My name is Alice Chen-Plotkin. I'm the Parker Family Professor of Neurology at the University of Pennsylvania. And I'm a physician-scientist, so I guess I'm one of the non-scientist stakeholders, in that I do see Parkinson's patients as a doctor as well. And then I spend most of my time running a research lab that focuses on mechanisms for the various neurodegenerative diseases. I hope my communication style is approachable and accurate and clear.

Sonia Vallabh:

Hi, I'm Sonia Vallabh. I am a senior group leader at the Broad Institute in Cambridge, Massachusetts, and an Assistant professor of Neurology at Mass General Hospital. I run a prion disease research lab at the Broad along with my husband, Eric Minikel. We run the lab together. The short version of how we got here is that I learned several years ago that I'm at risk of dying of prion disease myself. This disease killed my mom in 2010. I got my predictive genetic testing in 2011 and we ended up leaving our old, non-scientific careers in order to become scientists to work on developing a treatment. So I have a whole previous life as a non-scientist and I really do think of myself as both. My communication philosophy and, like Alice, this is something I hope I'm living up to is be a person.

Lauren Ullrich:

Hmm. I am excited to dive into what that means during the episode [laughter].

Olajide Williams:

Hi. Yes. I'm Dr. Olajide Williams. I'm a Professor of Neurology at Columbia University. I'm also the Vice Dean of Community Health for the Vagelos College of Physicians and Surgeons at Columbia University. And I'm a stroke disparities researcher, and also I focus heavily on health equity issues and community engagement. Forgive me, I'm going to borrow from Aristotle here and say ethos, logos, and pathos. Ethos is really focused on credibility when communicating. Logos is for really focused on the data, the statistics, the logic. And pathos is when you're appealing to the emotions. It's the emotional connectedness between you and who you're communicating to.

Marguerite Matthews:

I'm liking the diversity of words that we're having. And so I think this is going to be a really fantastic discussion.[music] So since we're talking about collaborations and partners in research, can each of you tell us why include non-scientists in your research and what different types of communities are you looking to bring to your science? When do you choose to engage them and why?

Sonia Vallabh:

I'm happy to start. So in our lab, we're kind of doing a lot of different activities that all point towards bringing a drug or, you know, a series of drugs, a meaningful treatment for prion disease to the clinic in our lifetimes and I think when we got into this, we had a sort of naive view of our role, which is we need to discover the molecule or help discover the molecule. And we were lucky to have really amazing mentorship from people here at the Broad, from our partners in industry, from various sectors, guiding us towards the larger picture of everything we were going to need to do. Including sort of figure out a lot of different tools that would support meaningful clinical trials, but a huge piece of that being define our community and find our community. And the defining piece ended up sort of surprising us in the sense that clinical trials had been done in prion disease and we had naively thought maybe the world knows how to do this. But when we really sat down and looked at both our data and our life experience, what we realized was trials had only been done in symptomatic patients who are extremely sick. And these are patients who on average from first symptoms to death is five months. So when we're talking about irreversible sort of neurological loss on this sort of lightning strike timescale, we realized that we needed to expand how we're thinking about the patient community in this disease. And we now do a lot with pre-symptomatic carriers of high risk mutations as well as patients. So that was a community that kind of had to be told, you're a community. Like from our perspective, you count. And maybe you don't see a neurologist and maybe you have an ambivalent relationship with your risk. But for anybody who wants to sort of step into the circle and say "How can I help?" We have ways. So we've been bringing at risk individuals to Boston for years now for a natural history study. We have created an online registry where they can sort of stand up and like raise their hand and say "Yes, if there was a drug, I would want to be in a trial." Because I think part of our job is just to demonstrate the willingness and the presence of these people. The fact that they identify as a community that wants a drug and that's willing to reckon with the risk benefit of an experimental therapy. So I think those voices have been a shaping part of what our mission even is and something that I thought I knew from day one, but that has like continued to evolve and surprise me.

Alice Chen-Plotkin:

I think I share the fact that most of the research we do is disease research, right? The goal is to find better treatments for people who suffer from neurodegenerative diseases like Parkinson's and various forms of dementia for which we really don't have very good therapies except for symptomatic therapies. So I think the reason to include non-scientists are multiple, right? At a very practical level, in our own lab we often use patient samples. And the goal there is to understand whether biological pathways we're trying to model in cells or in animals actually show the expected signature in actual disease and actual people, right? Because you don't want to be going down an avenue in your model and developing a perfect description of your model and not understand that this may not be relevant to humans. So of course, if you're using patient samples that involves the patients who provide the samples, the families and clinicians who support the research participation. But I think the other aspect of it and this is something I think about a lot because I'm a clinician; I see patients as well. The goal is to find better treatments. It's really important to make sure that what the scientist thinks needs to be treated [laughter] is actually what the people who you're trying to treat thinks needs to be treated. Because I can see a gap sometimes between my scientific colleagues who don't see any patients, they may think a certain feature of Parkinson's disease is a really big problem. But I kind of know it's not because I've just been taking care of these patients for 15 years. But I think that's also different from the perspective of somebody who's actually living with the disease. There might be something that they care about much more than, for example, their tremor, right [laughter] which is what we're always trying to treat. For example, the research in our own lab in Parkinson's is focused on cognitive decline because it turns out that's what people ask me about all the time. You know, they don't ask me, "how can I make my tremor a little better?"'cause we have motor drugs for that that are reasonably good. And also because most people care more about their ability to think clearly than their ability not to have a tremor.

Olajide Williams:

So from my perspective, I'm a stroke disparities researcher. And one thing that we know is that it's about 60 percent of these disparities are really being driven by social determinants of health. And just to build on that, we often talk about centering the patient, but how do you center the patient without centering equity? And how do you center equity without centering the community? And how do you center the community without engaging the community? You know, the truth is that people who are closest to the problem are also often closest to the solutions. So in my work, it's critically important to center community voice through a participatory approach. So a lot of my work is framed around a concept called CBPR, Community Based Participatory Research, where the voices of the community are not only centered, but the community is a partner in the research project itself from the beginning to the end, and even through publication. And so our community partners are the community stakeholders that are the target of our efforts to improve outcomes.

Lauren Ullrich:

And Sonia, you touched on this a little bit, but maybe each of you could go into a little more detail in terms of how you start building these relationships? As a scientist sort of coming from this science framework, are there certain ways that might be more or less fruitful in building relationships with non-scientists? And I imagine the approach is probably quite different depending on the community or communities that you're trying to engage and, what are some maybe lessons learned that you could share with our audience?

Olajide Williams:

I think the key is to recognize that trust is the key here, and change happens at the speed of trust. And how do you build trust? You can't rush trust, like every trusting relationship that you have in your life, you really cannot rush trust. You have to build trust. And so building relationships in the domain that I work in, which is community and health disparities, community engagement is key. And the key to community engagement, going back to my original three words, ethos, logos, and pathos, you need to either have credibility within the community. You might not have the credibility yourself initially, but you can certainly partner with those who have credibility. A community health worker is one example of a lay person who has great community capacity, social capital that we often partner with. Partnering with these individuals if you don't have the credibility yourself is critical. The second step after credibility is really introducing the evidence, the data, the rationale for what it is that you're trying to accomplish. That's the logos part, once you've built the credibility. And then it's always important when you're dealing with non-scientific relationships, especially in the community, to really think about the pathos aspect is that the emotional connectedness through the disease. It might be the person has a stroke and is emotionally connected to the topic of stroke, for example. Or the person has a family member or a relative with a stroke. And so the emotional connectedness is also really critical, but that's not just based on the content. That's also based on the nurturing of that relationship. And I'll just end with this from that nurturing perspective. And going back to the words of Maya Angelou, she taught me a lot, and she said that people don't really remember what you do to them or what you say to them, but they really do remember how you made them feel. And that is a critical part of relationship building.

Alice Chen-Plotkin:

And I think it's something we're almost taught to distrust as scientists. We're trying to be so objective all the time but you know, it actually governs all relationships. I think to just acknowledge that we're almost taught against that. But I was going to say that I think a collaboration with a patient or a collaboration with a patient's family member or a clinician, it's just like every other collaboration, you know, it doesn't work really well when one person feels like they're doing the other person a favor,

Lauren Ullrich:

Mmhmm

Alice Chen-Plotkin:

right? You've had scientific collaborations that are like that. You've probably been, you know, the one doing a favor, the one receiving the favor. I think in the long run, you know, like best case scenario is there's like a slow ghosting [laughter]. Worst case scenario is like, you feel really resentful or you breed resentment in somebody else. So I think there's got to be some aspect of like aligning objectives, right? So that each person feels like they're really kind of getting something out of it. So when we've had like patient samples, for example, I used to feel kind of bad if it was my own patients giving their samples, I felt like I was troubling them. And that really changed for me once because our lab had a paper and there was some press about it and the people doing the press actually said to me"Oh, it turns out you're actually a clinician too, so could we do an interview with you and one of your patients who participated in the study?" and I thought, "Oh!"[laughter] I was like super cringe, right? I felt like, oh no, I have to bother them to do this other thing after they've already done this other thing. But I found this one patient that I knew was a patient advocate. So I knew he was really public about things. So we did this interview together. This was really early. I was maybe a second year assistant professor when this happened. And afterwards he said to me"Alice I need to talk to you about something," and I said "What is it?" and he said "Well, you know I've had a blog for years now about my Parkinson's experience." And I was like "Oh that's great!" cause I knew he'd been through a lot of different phases. And he said "It's always been anonymous and I'm thinking about making it non-anonymous," and I said "Oh, well that's a really great step for you!" And he said "I'm making it non-anonymous so I can link it to the press piece," and I said "Oh, okay that's also great too! I really encourage you to do that." He's like "I'm not asking you to encourage me. I'm asking for your permission," and I said "Well why are you asking for my permission?" And he said "Oh, because you're in my blog!".[laughter] And then I was like "Oh, let me read the little bit about this person before we're both de-anonymized!" And I tell this story because it's about this relationship, right? Here, he was getting something out of this. The research meant something to him. And I didn't understand that, but that kind of insight, it's gone into a lot of other relationships. Like, I do think "Well, if I'm asking you to do something, but you don't really want to do it, [laughter] why am I asking you to do this?" You know,

Lauren Ullrich:

mmm

Alice Chen-Plotkin:

it's got to make sense for both parties.

Sonia Vallabh:

I love what you said, Alice, about not wanting to feel like you're doing people favors or they're doing you favors.

Alice Chen-Plotkin:

Right?

Sonia Vallabh:

Like I completely agree that it's not a sustainable relationship in the end. I've sort of been a research participant and the person who runs research studies. And to your point about things have to make sense. Something that I have really resented in my life as a research participant is when I join a study that is supposedly focused on, you know, I'm a carrier of this mutation that causes genetic prion disease. And that's sort of like a very specific thing. And then all of these other things are lumped in. So like my study visit contains things that obviously relate to different ways we're going to study genetic prion disease. But also, there's like this random thing that's clearly a favor to someone else in the department. Like, "Oh, I'm going to go give like tear fluid for blah, blah, blah or get like imaged for this other random thing." And it just kind of feels a little crappy to feel like there isn't a purpose that is really clearly linked to like my community, my interests, and my motivations for being there. But it's more just like- well, here's a human body [laughter]!

Alice Chen-Plotkin:

And it's respect for your time, respect for your personhood, right?

Sonia Vallabh:

That's right. That's been an education for me because I have advocated long and hard to keep our own studies very focused and very trim. And people say to me "Oh, we're putting in all this effort to fly people here and they're going to be here. And shouldn't we collect like random comprehensive X, Y, and Z that we can store for a million years because who knows what--" and I say "No," right? You've got to like align your purposes really closely because a point that both of you have touched on, I think, that is part of the trust building, right? Is feeling like your rowing together in a really specific direction.

Alice Chen-Plotkin:

I was just going to say, I was thinking a little bit about the fact that you're a hybrid person, right? You've been on both sides. I do think there's a lot of strength in training hybrid people, right? Training people who are both participants and scientists. The other reason to have the lay participant in your studies is because it does affect how everyone thinks and talks. When somebody is an invisible participant, you're not thinking about their time in the same way as if you're faced with that person, right?

Sonia Vallabh:

Yeah

Alice Chen-Plotkin:

And so that person could be on your research team, they could be a hybrid person or they're on your advisory committee and it actually kind of makes you and your whole scientific team realize that this piece of data I have, [laughs] you know, this cell culture I have came from a human like me who, you know, maybe had to drop off their kid at a soccer appointment like me, you know, so on and so forth, right?

Sonia Vallabh:

Totally.

Olajide Williams:

I just want to say that I think both the points you made about alignment is so critical. Um, and the other point that I think I heard was bidirectionality. Too often it's coming from the scientist's perspective. The scientist drives everything, and the patient isn't being centered beyond the scientific goals and the scientific objectives. And you lose that bidirectionality or you lose that alignment and that makes it difficult to sustain the effort and also breaches trust. There's a model that I like to use when I'm running my studies. It's called the participant and relationship centered research engagement model. And it focuses on like six broad areas. The first is relationship. It's like a pyramid and at the bottom of the pyramid is really the relationship that we have with the patient. And the relationship has to be bidirectional in order for it to be sustained. And that means it has to be beyond just the research study and study goals itself. It has to be a little bit more than that for it to be bidirectional. And then obviously after relationship in the pyramid is the inclusive design. And then you have accessibility and then you have fit. And it's also important as you think about accessibility when you're talking to these individuals is to consider that some of these patients might have real challenges with certain social determinants. You know, are we supporting child care? Are we supporting transportation? Are we supporting the time that they're taking from a per diem job? How we mitigating these factors? How we really centering that participant and all the participants need so that they know that we're looking out for them and not just their participation in the study? And then the final one is fit, ,openness, and readiness. But I think that those first couple of things. The relationship part, that bidirectionality and the alignment that we talked about, and then the accessibility and making sure that we recognize the total patient and the needs of the total patient is not just you get X amount of dollars for this visit and X amount of dollars for that visit, is what do you need to participate? How do we reduce the barriers? Do you need child care? We have to be proactive. Do you need us to arrange transportation for you? We have to be proactive. You know, are you caring for an elderly person at home? You know, all of these factors are critical because these are the things that help build trust with the patient and help encourage the patient to sustain their participation in the project.

Marguerite Matthews:

I think that's a really great point Olajide, and I appreciate so much that has been talked about, about centering community, centering patient voices, and ensuring that their interests and motivations are included when thinking about how to approach these problems. And trust, obviously, is such a huge part of that and what you just touched on about specific needs. But can you all think of other types of barriers that may either derail these relationships with communities and patient populations, or perhaps you tried something that you thought was going to really help solidify this partnership that maybe didn't work out and you had to go back and try something else or kind of take a different approach?

Olajide Williams:

We had a patient who was scheduled to come for certain screening visits, you know, baseline screening, follow up visits, et cetera, et cetera. And the patient didn't show up for the visit. And he told our research coordinator that, you know, is it possible to do Saturdays? And I really want to be part of this study, but gave all of these really challenging reasons related to poverty and life, um, why he just couldn't come during the hours of the week. We actually added those Saturday visits now to all subjects, and it was amazing how many people actually took those Saturdays as a preference. But, you know, we had to work with, you know, obviously there are unionized staff, there's when you work extra hours and all the additional compensation, you know, there are legal and structural challenges to having a staff member come on a Saturday or after hours to work. And so we had to overcome those challenges. And then it really, really helped with that individual patient.

Marguerite Matthews:

And clearly it seems to have helped more of those participants. And maybe there were people who were afraid to ask for additional help or alternative opportunities because you know, for any number of reasons, especially when we're thinking about minoritized communities and marginalized communities, there's this reverence, I think, often for the profession, for this type of work. And so they want to be grateful for the opportunity to be involved, but also, like you said, like it should not only be about receiving a benefit on only on one end. That's really very encouraging to hear that these types of considerations are being made so that everyone benefits, right? It's not just those who don't have, but other people may also need some of these shortcuts or other opportunities that allow them to participate and really feel like they are being considered.

Alice Chen-Plotkin:

I was going to use a real life example. I think that the theme is also just like kind of making things as easy as possible for everybody given kind of the constraints they live under. So for the participants and patients, it's often basically about some of these kind of social determinants we're talking about. And also kind of about being clear and able to use lay language they understand what you're trying to do so that you can align goals, right? But clinicians you have to understand that they're operating within a system. And their time cannot just be donated to your cause, right? So either basically that time has to be kind of valued appropriately, or it caused them to kind of create a favor for you to make your study happen. So for example, one thing we started in late 2018, we could see in Parkinson's disease that many of the disease-modifying trials and hopefully eventually disease modifying therapies might need some molecular information. You know, do you carry genetic variant X, et cetera. And what you could also see is that in the Parkinson's clinic, we're entirely clinical. Like we're just having people tap their fingers, and we're observing what's happening. People are not getting lab draws. They're not getting this genetic information. And so you're just thinking"How is this going to happen? Like how can you ever move to a molecular model of care?" like, you know, in a cancer clinic, if the way we practice our clinic doesn't even involve a blood draw. So the thought that we had at Penn back in late 2018 is we're going to create a molecular clinic. And we set a very high goal. We said, we're just going to take everybody in our whole clinic, seen by 17 different doctors, and we're going to enroll them all in our research study. And we weren't able to do that, but we captured like, you know, 1700 people. And we did that, you know, through the pandemic and everything. So the question is, how are we able to do that? And I think that there are a few things. One thing is just that everybody could see the rationale really clearly. You know, there are these therapies that are coming down the line. They're going to need this kind of data. We don't have a way to collect this data. And so basically the treating doctor and the patient who could or could not carry one of these variants all are on board. So that was the first thing. The second thing is we made it super easy. We weren't counting on the doctors to sort of enroll patients. We weren't counting on basically the nursing staff or the medical assistants. We just sent people in. You know, all we needed was like a quarter of a room to do the consents and things like that. And we made sure that basically it wasn't going to interrupt clinic load. This is really important, right? Just understanding kind of the parameters on which you're working, right? This is the don't take advantage of other people part. And truly me and the other clinician who started this, we started in our own clinics first because we wanted to work out the kinks, you know?[laughter] and not have it affect anybody who wasn't invested. And then the other aspect of it is we rolled it into the clinical visit. So if you've been to the doctor, you know that sometimes you're waiting before you see your doctor, right?[laughs] Or sometimes basically afterwards you're checking out and you're still just kind of waiting for your car or something. So were like, we're not going to require a separate visit. That's really onerous, but the person's there already. And so we didn't have extraneous things. We had the basic kind of like most critical things in the study and we used it essentially as a gateway study too, so people can be approached for future studies if they qualify. But we made it as easy as possible and I think essentially making it really easy on the doctors and the patients, making it something people already understand and want to do. That was what sustained us because we did not know when we started this, that then there would be a pandemic and the clinic would shut down. I mean, we operated through the whole clinical shutdown because the drive was so strong from the whole community. And when I say we got 1700 patients, that was like, essentially, 80 percent of the people we approached. So I think this aspect of just aligning objectives, making it simple. And I think the other aspect of it, and this may have to do with that kind of trust quality that you were talking about Olajide, I was there trying to make sure nothing was operating differently from what I thought. And if something was not working really well, then I would go in there and try to fix it. And I think that kind of ownership that if I'm leading this study, the buck stops with me. You know, you can find me, I will fix the problem. That goes a really long way. Cause you're going to mess up, you know?

Lauren Ullrich:

mmhmm

Sonia Vallabh:

I really liked that point about keeping things simple. And I think you're often trading off these different values, all of which you would love to maximize, right?

Alice Chen-Plotkin:

Sure

Sonia Vallabh:

When we set up our online registry, one value was, we sure would love accurate and comprehensive information. And a sort of competing value was, we sure would love for this to be simple for patients. We don't want them to have to go through their doctors to create an account. We don't want them to be required to dig for paperwork that shows their parent's autopsy report or their predictive genetic test. What if they can't find it? Like these are just sources of attrition. So we ended up erring on the side of making it very simple. But the other thing I was reflecting on hearing you speak was that I guess I felt the need to acknowledge the way our best intentions and our systems can work against that, right? Because I think why does an institutional review board exist? In theory, it's to protect patients, it's to allow them to trust us. But here we are, many accidents of history later, and because our IRB requires it, our consent says things that are terrifying to patients. Our consent says things like this blood draw, which is utterly routine, there is a chance that it could get infected and that infection could kill you. There's a chance that the DNA in it could be captured by a hostile force, sequenced, resynthesized and planted at a crime scene, right? Just like preposterously unlikely scenarios are required in their briefing. And I don't exactly have the solution to that, but I think we're all navigating waters that in some ways maintain a participant divide or like a researcher-subject divide. And it's always a little bit of an uphill thing to swim against those forces.

Lauren Ullrich:

I wanted to go back to something that you talked about, Alice, which is thinking about how the priorities of the people that you're including in your research may not be the same as the priorities of the scientific community and if there are additional examples that you have of that. But then also the Parkinson's patients as a group, I'm sure that's a huge community and there's probably many different priorities in there. So how do you think about getting information from (quote unquote) "the community." And how do you decide the best way to align those different priorities with your priorities and your interests as a clinician or a researcher?

Alice Chen-Plotkin:

So I think about this in two different ways. You know, there's sort of like what I do in my lab. And then [laughter] I actually just organized in April, this NINDS workshop on setting research priorities for Parkinson's disease. And people with lived experience were just part of the panel. They were kind of in the workshop, it was also virtual too, because that kind of overcomes a lot of the barriers people may have to like traveling to a specific place, you know, in Bethesda, Maryland. But I think having a multiplicity of voices is important. Certainly when I'm writing grants, for example. And I tell my students this, get a lot of different opinions if you're going to get any opinions. And then look at where the overlap is. If the overlap is there amongst the opinions you've gotten about your paper or your grant, then that's probably a problem you have to solve. But you don't have to take everybody's advice if they're all saying different things. So. that's what I think when I'm thinking about making plans as a big community. If we're making plans within our lab, that's sort of, you know, a little bit trickier, right? Cause most scientific projects are driven by a specific person who's trying to answer the specific question. So how can people who are just working in your lab, how can they sort of understand? So one thing we've done is we've sent a lot of people who aren't clinically trained into the clinic. Cause I think it's possibly useful for the people who are just working in iPSC [Induced Pluripotent Stem Cells] cells all day to understand that this is what you're trying to do. This might be where your cells came from, you know?[ laughter] And I also think it's been great for some of my own patients. They're really happy to meet young, smart people who are spending a lot of time thinking about their shared problem. So I think that that is kind of helpful, but I don't think I have a great answer to that because I don't think I top down decide everything that happens in my lab. You sometimes follow your nose where the science goes. I will say the other aspect of sending your trainees into sort of lay environments is that it does teach people how to communicate to a lay audience. And I think that's great to learn from the get go. We send undergrads to do this, you know, because the sooner you learn how to communicate clearly, the better, I think.

Sonia Vallabh:

I'll just pick up on that to say I think there's a certain trendiness right now among incorporating patient voice and patient focused outcomes and all of these sort of metrics across sectors. And I agree, I feel a concern around the way patient voice can sometimes be treated as one thing.

Alice Chen-Plotkin:

[Laughs] Its not..[laughter]

Sonia Vallabh:

Yeah, definitely. It's like, it's a whole bunch of people, they feel a whole bunch of different ways. I do think that there's a spectrum where there are genetic variants that underlie a phenotype that can be viewed as a way of being; it can be viewed as a condition that needs a treatment; it can be viewed as a disease that's an emergency, right? I think in prion disease, no one relates to prion disease as part of like a positive identity that they want to hold on to. So I think we're reasonably united in thinking that this is a disease and a problem. But, I think no matter how far we get down the pipeline of trying to develop a therapy, there will be people who for various reasons don't want it. I think there will always be people who don't want to get predictive genetic testing no matter what, because they don't want to engage with their risk before they absolutely have to. And that might mean that we can't reach them at the earliest moment when treatment would make the biggest difference. And I think there will be people who for all sorts of reasons related to personality and personal history and faith and relationships don't want to deal with the medical system. And if that's where they have to go for a drug, they would rather stay home. And I get all of that. We often get challenged on, like, for our natural history study, for our clinical trial cohorts, like are these folks representative given that they're so motivated? And I think my answer to that is "no, but they are representative of who's going to show up today and in the next phase and in the phase after that," like, hopefully we grow the circle of interested parties. But fundamentally, the people who are motivated because they are hopeful for a treatment and they would like to receive one are the people who we're talking about, right? And people who would rather be on sort of the periphery or outside that circle, that's, that's also a choice.

Marguerite Matthews:

So can you all share what approaches you use to share your research findings back with the community? And does that happen in a variety of ways, like not just written perhaps, like very academic, perhaps forums or other opportunities to engage more directly? What does that look like?

Sonia Vallabh:

We do a lot of different things. We say yes almost always to talking to general audiences, to talking to sort of the lay public, talking to the press about our work. We take a lot of opportunities to get in front of the patient community of which we are part. But something that we've been doing from the very beginning, and I give my husband, Eric, a lot of credit for this is he blogs all of our science. And we have two different outlets, one that is more lay oriented, that's our nonprofit Prion Alliance. And Eric has a blog called CureFFI.org that is more in the weeds scientifically, but still intended for people who are not prion disease experts. And it's been interesting. I think we really took our inspiration from Jeff Carroll and Ed Wild, who founded HDBuzz in the Huntington's disease community and blog in super plain language about Huntington's disease developments. And something I always admired about them to this day is that they're ultra transparent. And I think they take a super direct approach to like heading off false hope. And I think that is one of like the great liabilities in how do we interface? Because I want to convey the right amount of optimism. Not too much, because I don't want people to believe that I can cure their loved one today. I can't. But not too little. Because I think it's actually, it's easy to say I need to be super conservative and then deliver too little hope

Lauren Ullrich:

[mmhmm]

Sonia Vallabh:

such that people walk away and say, you know what, like there's never going to be anything.

Marguerite Matthews:

Yea

Sonia Vallabh:

I really don't think that's true. I think there are real reasons to get involved today. So that's like the delicate balance that we're always trying to strike. The final thing I'll say about this is my three words about my science communication ambitions were "be a person," and that's actually my communication and philosophy, not just for communicating with patient community versus scientific community, but just like communication in general is, I think, as sort of a blanket guideline, people don't want to feel impressed. They want to feel connected. And I think we are so schooled in how to impress people. Not just the scientists, but like as people just existing in, you know, 2024, I think that's like in the drinking water. That's part of how everybody interacts with everybody all the time. And I think we come to believe that it's what people want, but I think whether it's like talking to a patient one on one or talking to a room full of scientists, I've come to see it the same way. I think even if people come into that room thinking they want to be impressed, if they leave feeling connected, that's a better outcome for everybody. So that's my North star. I don't always do right by it, but I try.

Olajide Williams:

So my research is a little different. I do a lot of behavior change research around risk reduction, symptom recognition, et cetera. So my research is a little different and it's also focused around communities of color. And so I, read the Tipping Point, one of my favorite books by Malcolm Gladwell. And he talked about three things. He talked about the law of the few, and then he also talked about the stickiness factor and he talked about the power of context. The law of the few is really the idea that you only require a few people, you know, the 20/ 80 rule, that few people are the ones that really drive that change. The stickiness factor is really how you create the message with the properties, with sticky and contagious properties which facilitates emotional connectedness. And the power of context is about small changes in the environment, making a big difference. First of all, I just want to acknowledge that we do all the traditional things. You know, publications, media interviews, going to big conferences, presenting your results, going to different types of conferences, working on podcasts, I accept every interview with anybody. But when it comes to the law of the few, we have this network of community health workers, for example, both locally and nationally. And these are people with powerful social capital in the communities of interest. And we equip these individuals with the tools to really help us disseminate and sometimes even implement our findings. And we found to really good effect that they can really do an incredible job. We have a program called Hip Hop Stroke that uses youth ambassadors as well as teachers and facilitators to really drive our intervention in school systems. And we're in schools all over the country, and it's even been adapted in several countries around the world. And that's all on the grassroots implementation and dissemination. In the work that I do around behavior changes, we also think it's really important to pay attention to the properties of the message. You know, the stickiness, the contagious factor. And using different outlets, multimedia type approaches . Working again with that participatory approach to build your dissemination implementation strategy by including people with the lived experience, who you are targeting in the D&I [Diversity and Inclusion] approach has been very helpful. Having an implementation science framework is also very, very helpful. And then also recognizing the very small changes can lead to really powerful behavioral outcomes is something else that we do. But again, my research is really focused on behavior change around cardiovascular disease in communities of color.

Marguerite Matthews:

Just as a side note, I want to thank you for mentioning Hip Hop Stroke. I had the opportunity to hear you speak at ABRCMS or Annual Biomedical Research Conference for Minoritized Students few years ago. And it was so much fun to see you on stage, the videos, just the way in which you make something that can seem very scary, a condition that is truly devastating if not treated properly, but to make it so easy to understand, so tangible for everyone really to get involved, to be excited, to learn more and to do more, uh, and pushing this forward. So just kudos to you and that entire project.

Olajide Williams:

Thank you.

Alice Chen-Plotkin:

I was also going to say that, three of us, you know, we lead groups, right? We're not the only person in the group. So we lead groups and then those groups interact with all of these research subjects, participants, whatever. And there's only so much time you yourself have. And it's divided in many, many different ways. And so one thing I think about a lot is I basically try to activate other people [laughter] within this whole enterprise to get the word out. Like I get the invitation, I can't do every support group.[laughter] I send the undergrad, the PhD student to the support group. And what you're teaching everyone is that you're training as a scientist is to take responsibility for your work, to realize that work is yours. That you can speak about it just as much as Alice Chen-Plotkin can, maybe more. So I think you're teaching your trainee to take responsibility for the work and that you believe in them. You're not worried they're going to mess up. Or if they mess up, it'll be okay. You know [laughter] they'll learn from that. And so I do think having this realization in whatever organization you're working with, you know, and like, I'm thinking about the people who are listening to this podcast, some of them may run little groups, just to realize it's not all on you, right? You know, the more people you can kind of activate to get the word out about what they're doing and why they're doing it. I'm quite sure that for this thing we were doing with the molecular clinic, I'm quite sure that the reason we survived the COVID pandemic is like a lot of the participants were just all talking to each other. There were people who were like"Oh, did you do this such and such? I heard that you can actually send a saliva sample now!" You know, things like that. And so just to be aware that in addition to kind of these sort of top down communication strategies that we often have, where we're holding the retreat we're putting on a conference, or publishing a paper or, or kind of blogging, right? You know, when we do all these things, just to have a sense that there's a whole bunch of other people who can also talk about their work and their participation, you know their participation is work. They probably did more work, you know, to come over there and do their spinal tap. So I think just encouraging ownership and I do think when I think about patient participation. It's really good for the patient to understand exactly what you're trying to do. Because A) that is informed consent, and B) then they can be an ambassador for your study. It's like, if I go to get my hair done and it looks great and I love it, I'm going to go tell like 25 friends, right? There's this aspect too, right? So...

Olajide Williams:

Very quickly. Just want to say, Alice, that you make a huge point and I just want to reemphasize that because we, for example, work with the International Youth Neuroscience Association, IYNA, around our Hip Hop Stroke project and they have not only national chapters. These are young, high school students who are very excited about neuroscience. They're unbelievable organization, they have both national presence and international presence. And after we published our findings, they adopted the program, the Hip Hop Stroke Program, these youth. And they have chapters all over this country. And they adopted and they took it out there themselves. And they were the ones pushing it. So, recognizing that there are other constituencies that you can partner with in the dissemination of the findings is critical.[music]

Marguerite Matthews:

Thank you all for sharing your wisdom with us today. Can I ask each of you for one last piece of parting advice for our listeners?

Olajide Williams:

Change begins at the speed of trust.

Marguerite Matthews:

Wow! You are, you're, you're trying to get that, uh, guest of the season award with these quotes. I'm loving it.

Alice Chen-Plotkin:

Well I'm gonna quote somebody else. I'm gonna say be a human![laughter] I'm not joking. I do think a lot of it is just acknowledging your own humanity. You know, your foibles too. And a lot of what I was saying about a relationship. Most of our relationship is about being a human yourself. Not some font of wisdom, not the queen of the world, right? Or something like that.

Sonia Vallabh:

Yeah. I think I would say, you know, people say to me sometimes "Oh, you're in such a unique position because you're a patient and a researcher and you're on the sort of human side of this problem and you're a scientist." And like, maybe that is cued up in a really specific pointed way in my situation. But I think It's like not remotely unusual. It like is sort of the baseline state that all of us who are doing science to help improve the situation of the human body are operating human bodies every day, and that's our vehicle for doing anything, including this work. And I think everybody, I mean, depending on where you are moving through sort of your life and your relationship with your body, potentially you have been a patient in any number of ways. And I think people who work with us in various capacities, I think get a chance to sort of reflect on that, on what it means to be a patient scientist, very, very broadly defined. And when we talk to, you know, younger trainees who have had the incredible good fortune to have strong health and maybe also their parents and their immediate loved ones, a homework assignment I love to give them is go out and find someone who you are close to on some axis, and maybe it's like an older generation in your family, and interview them on their sort of like most vivid patient experience. Because I think it's kind of an education in this journey that we'll all travel. And we're all, you know, in innumerable ways on both sides of it.

Alice Chen-Plotkin:

So I was just thinking about what you were just saying and I do think there's this way we always dichotomize, right?

Sonia Vallabh:

Yeah. Yeah.

Alice Chen-Plotkin:

There's the researcher, the participant, the scientist, the non-scientist, you know? And I do think one huge mission in my life, maybe because I've always been a hybrid, is to just dismantle the dichotomy when I can. Because it really hurts us sometimes, you know? It is this aspect of us against them or you're not doing enough for me or something like this. And so I guess what I'm saying, you know, because we're talking about sort of building scientist- non-scientists relationships. Just even that sets up a dichotomy. This is coming back to be a human. At the end of the day, there's something you share, which is kind of oftentimes a mission around the disease, and certainly your kind of experience of humanity and the things you'd want to have to lead a meaningful life. And to try to be able to resist the dichotomy if you can.

Marguerite Matthews:

And Lauren, what's your advice?

Lauren Ullrich:

We've had such good advice.

Marguerite Matthews:

I know it's like, where can you add?[Ah]

Lauren Ullrich:

Yeah, what can I add to this? Um, I mean, maybe I'll just underscore this theme thats run throughout this episode and maybe even throughout the season of like, humility and being trained in science doesn't always encourage the humility.[laughter] But recognizing all the things that other people can bring, the richness of their experiences and priorities. And really just like listening, and not trying to put your own preconceptions on to them and what their experience might be, but really just asking questions and listening and then seeing how that can enrich your science is probably the best way forward.

Olajide Williams:

We call that centering the margins

Lauren Ullrich:

hm

Olajide Williams:

that's the term to what you've just described. And it's really all about making sure that you don't only see things through the scientific lens. You also see things through the patient's lens. And that means really centering the patient's lived experience and perspectives in your communication, in your approach to the patient. It's amazing how many times we design and develop scientific research protocols that really doesn't quite center the patients and it's unfortunate because as I've always said, if we want to be patient centered, we have to be equity centered. And if we want to be equity centered, we have to center the patient's lived experience and perspective as a lens through which we approach our own work. And I think we definitely need more of that as scientists.

Lauren Ullrich:

Well said. And Marguerite, what about you? What's your advice?

Marguerite Matthews:

Well, Lauren, for the first time in a long time, uh, you stole my answer![laughter] Plucked it right out of my brain, uh, but I think I'll also take what you said a step further. Entrusting the people you're working with, whether they are people with lived experiences, showing up as patients, or maybe other non-scientists that you're working with is trust that they have something to add to expand and advance your knowledge. Not to try to bring it down or make it different, but there's room for so many different approaches, ideas. Even tending to those little needs that people have that may be barriers to their participation. All of those things will come together for us to really be better humans and better address some of these really challenging health problems that we're facing. So yeah, I would just say continue building that trust, but thinking of trust far beyond just having someone trust you, but you trusting them that what they have to offer is more than just their data.

Lauren Ullrich:

That's all we have time for today on Building Up the Nerve. Thank you to our guests this week for sharing their expertise. Thank you to Ana Ebrahimi, Mariah Hoye, Jimmy Liu, Joe Sanchez, and Tam Vo for production help. And thank you to Bob Riddle for our theme song and music. We'll see you next time when we tackle crafting effective presentations. You can find past episodes of this podcast and many more grant application resources on the web at ninds.nih.gov.

Marguerite Matthews:

And be sure to follow us on X @NINDSDiversity. You can email us with questions at NINDSNervepod@nih.gov. Make sure you subscribe to the podcast on Apple podcasts or your favorite podcast app so you don't miss an episode. We'll see you next time.