Lindsay  0:00  
Hi. I'm Lindsay Wahlstrom Edwards I am the partnership lead for Sano genetics. At Sano, we're on a mission to accelerate the transition to personalised medicine. We do that by putting participants at the heart of research and making science more accessible by facilitating at home genetic testing educational materials and all within a privacy first approach where individuals own their own health information and can make informed decisions. We work to help accelerate recruitment and for precision medicine studies, but also helped to put together virtual biobank. So we think there might be a genetic linkage somewhere, we want to see what those genes might be and might be associated with health conditions.

Dale  0:37  
Dale Smith, good to see everyone here. I am the co founder and CEO of ag clinic, we work to improve health equity by enabling inclusive research. And we do that by helping pharmaceutical companies and healthcare organisations ensure that they adequately access and engage communities of colour as a result of that we build trust, and we're able to know how to present the right type of opportunities to take part in research to our communities of colour, and the end result of all that is more inclusive research. Pleasure to be here.

Ebony Scott  1:08  
Thanks for joining. Hello, everyone. My name is Ebony Scott, and I'm the director of health equity for both lupus Research Alliance and lupus therapeutics. Our main mission is really to advance lupus research and ultimately find a cure. In my role, I'm really taking an intentional approach in trying to engage underrepresented minorities in lupus research. As we know, our communities of colour have the highest prevalence rates of lupus. So with lupus Research Alliance, where we focus on patient advocacy and engagement, we combined with lupus therapeutics, which really focuses on all things, clinical trials. So I'm excited to be a part of this panel. And looking forward to this discussion today.

Lindsay  1:49  
Thank you so much, Evany.

Natasha  1:50  
Hi, everyone. Great to be here today. I'm Natasha, the director of community engagement and partnerships, that couch health, so a couch, we are a creative health engagement agency. Our mission is to make health human. And we want to do that by elevating the voice of patients and communities and make sure that they have a say in research to help them partner with sponsors and researchers. And yeah, support healthy engagement and more inclusive research.

Lindsay  2:19  
Thank you so much. So I mentioned that we'll do a very quick introduction to precision medicine. If you know me, you know, I'm fairly informal to invite my fellow panellists to jump in at any point to add some additional context and colour to what I'm going to cover. In looking at who registered to participate in the webinar. We do see quite a few of you have extensive backgrounds in research or precision medicine, so we won't get too basic, but I did want to give a little bit of colour and context to the conversation today. So very quickly, precision medicines are on track to surpass non precision medicines in the next five years. I think many of us in this industry like to think of precision medicine in the context of oncology. I was at a conference this week and heard someone say, Oh, when I think about precision medicine, I usually think about cancer. But really the the science that's been used to inform the new treatments that are coming out in the oncology space can also be applied to different health conditions as well. And we're starting to see that trend more and more conditions like Parkinson's disease, Alzheimer's, lupus, for example, in Ebony's world, so it's really important to start thinking about how to make access to genetic testing acceptable and equitable in our approaches to ensure that everyone is covered. Why? Well, in 2009, there was a some work done that showed about 4% of the genetic information used in Chihuahua or genome wide association studies came from non european white individuals, their work was redone in 2016. By Alice Pope join Stephanie Fullerton, at that point, about 20% of participants were not white, non European. So about 81% of people who had participated in that work were white Europeans, and what Europeans represent 16% of the global population. So when we're, we're doing the work, that's actually identifying the genes that are associated to different health conditions, we're only taking into account a small percentage of the population. And there's some downstream effects for that, which we're going to dig into in a little bit. But when we start to look at broader populations, we see some trends. So, for example, natural the Nash non alcoholic fatty liver disease, this is a growing area, we're seeing that the PMP lay three gene, for example, which is very common in Hispanic populations, specifically, Mexicans and Mexican Americans is associated with not only development of fatty liver disease, but also swifter progression onto the continuum to Nash and cirrhosis. It also matters to look at ethnicity beyond beyond racial background. So for Parkinson's disease, the work that's happening with Lark to GBA one for example, we're seeing specifically with look to the variant is much more commonly found in individuals with Ashkenazi Jewish or North African Berber ancestry. So some regional variations where we're seeing these trends, genes that can make people not only more likely to develop a certain condition, but also there are treatments that are being developed for those specific genes. And we want to make sure that we're able to identify who has those variants, and who needs to access it. And as I mentioned, we're seeing more and more of this work being done. So lupus, von COVID IBD, including Crohn's and Ulcerative Colitis, type one, diabetes, type two diabetes, kidney disease, Alzheimer's, high cholesterol, there's some approvals there that came out the PCS canine can work for high cholesterol for a certain population. So growing, and it's an important body of work. So before I jump into my questions, are any of my other panellists? Do you want to add anything to that conversation about the background, precision medicine, what we're seeing today?

Dale  5:45  
I think that was a great summary, Lindsey, will probably get too much discussion once you throw out the question. So.

Lindsay  5:52  
Okay, so hopefully now we've set the stage for everyone in terms of what why are we talking about precision medicine, what is it, it's using our genes to start identifying treatments that might work we're seeing with long COVID, for example, some people look like they've developed something similar to lupus, and people look like they've developed something like chronic fatigue, it's helping to accelerate the work that we're doing in identifying potential genetic causal pathways, etc. So when we then think about the context, they share with the data, and the lack of representation that we see, in the panels that are being used to inform this research that's being done, it gives me pause. I think it gives probably everyone on this call pause, which is what you agreed to join me today. But I am wondering if we can just do a round robin of in your mind, what is the risk for us not getting to greater parity, greater representation, the heart of the webinar? Why does representation matter when we're talking about genetics and precision medicine. So I guess I'll just

Ebony Scott  6:49  
start and I'll speak for lupus, I think it's always important to share some facts about lupus. And we never want to assume that people understand or are understand the intricacies of lupus. So Lupus is a auto immune disease that unfortunately, is very homogeneous, and that it can affect multiple different vital organs in the body and one's body. So it can manifest in the kidneys and the lungs received during dermatology issues and so forth. And so for that reason alone is extremely important that we start to move into precision medicine, medicine, and that we understand that it's going to manifest and look differently in every person. We currently have three approved FDA drugs, or three FDA approved drugs for lupus. But when you start to look at into who was are the participants included in these clinical trials, you see that unfortunately, less than 20% represent the ethnic minorities that we see have the highest prevalence rates of lupus. And then when these prescriptions are these drugs are now being distributed and communities of colours, we unfortunately see all these side effects and symptoms that we're not, you know, address or properly, you know, thought about what in the clinical trial phase. So I think it's extremely important when we're thinking about lupus, and that how it can attack many different vital organs. And it takes many different manifestations that we know that unfortunately, one drug is not going to be a one treatment is not going to be efficacious for all so is extremely important that we start to model oncology when looking at precision medicine, looking at the different genetic factors, DNA strands and things of that, and started to model that in lupus.

Dale  8:32  
Anybody sent that so well, I'll speak to some personal experience that really drives this issue home, I'm actually in Atlanta today, it's where I grew up when I was younger, and my mom was a healthcare professional here in Atlanta, and she contracted tuberculosis in the process of care, home health care. And they did what they normally do people, which is they give you one drug, and they see if it's gonna work that they give you the second drug and the third drug. And of course, that's all about trying to figure out which one is going to have the highest degree of efficacy. And unfortunately, she died a year later, because the drugs didn't work. Now, what the research later found out and reported on several years later was that you could actually perform a genotype beforehand to know which of those three drugs will have the highest level of efficacy, right. And so that is a very specific example, particularly on the outcome based issue of this. And it could have changed the outcome for my mom. But as I play that out, Lindsay also think about, we didn't have insurance at the time, we were in and out of hospitals that were really meant for a trauma versus treating a communicable disease. And I wonder even if that was available, if we would have been in a place to be able to advocate for and to be able to speak to wanting to have that as an option. And so I think, you know, when we talk about precision medicine, we can think about it from a clinical and a minute of medical aspect of things. But we also have to think about it from a social aspect. And then of course, my business hat thinks about this from an economic model as well to both in terms of what it costs has to do to do this type of research as well as what is going to mean for potential potential patients in terms of their ability to pay for the options that are presented here versus kind of a one size fits all prescription. So I'll stop there.

Lindsay  10:12  
I think all great, all great things I do want to dig into, I want to give Natasha a chance to respond. And then we'll probably segue. Right, right into those things. Yeah,

Natasha  10:21  
just to build upon really what I believe, and Dell have said, I think, you know, I guess what it comes down to is that I think if we don't address under-representation, we will increase health disparities. Because if we are moving towards precision medicine, and that is only modelled on a subset of the population, it means that, and when we think globally and minority of the global population, then the medicines and treatments that we're developing are not going to be suitable for, you know, the large majority of the global population. I think, you know, if if I think, yeah, it took if we have to boil it down to one point, there's lots of different points. But I think, you know, there's the risk that we will increase it, I don't think it's a risk, actually, we definitely will increase health disparities, if we do not address under representation in genetic research. And I think probably something that we can come on to is, is not just thinking about, you know, as Dell touched upon the so many of the factors, it's not just the genetics, but we currently, you know, don't really have that good and understanding really of gene environment interactions. So even once we understand genetics, it's then well, what's the context? What's the individual's context? What's the social and economic context, all these other factors that are going to affect then how, you know, genes, you know, are activated and people's risk of disease as well. So I think it's, you know, we have to really address this as a as an industry. Now,

Ebony Scott  11:50  
can I just add something, because Dell, you really touched upon something we talked, shared your mom's experience, so I rarely talk about personal stuff I tried. But you know, it definitely raised something me. So my younger sister, she suffers from tuberous sclerosis. And so that was the first introduction, we had to autoimmune disease, genetic testing all of these things. And so we she has insurance, but unfortunately, her insurance did not cover the genetic testing. And it was way in the 1000s, and 1000s of dollars. And so for years, she presented with all the symptoms, now she is the first in our family to suffer from this. So she had like, the butterfly rash, and she had white patches, and aggression, all of these things, because but tuberous sclerosis, it manifests as tumours throughout your body. So it can impact your eyes, your lungs, your brain. And in many times, we were wondering, what's this puberty that she was going through, because she started to really act out. And it took years, honestly, years to get a diagnosis, because of the time the doctors were not, you know, saying to do genetic testing, they were, you know, attributing to her condition to all these other things. So, in addition to, you know, as advocating, we really need to look at the social determinants that people are being faced with in their living and how that impacts your ability for accessing care. So yeah, I just wanted to add to this point.

Dale  13:14  
And I think the reason that's so significant, Lindsey, right. It's kind of like we're starting with the end. But you know, the question here is definitely about the research that's needed to ensure that these these medicines are precise for the individuals. If there's not knowledge and awareness and empowerment and advocacy, on the on the patient side, you wonder where the impetus is going to come from in order for the inputs to change and the process that changes, I think that's the reason why these stories that we talked about are relevant to people I know, and myself included, who have enough stories, like we just shared, all of a sudden, now when we think about a medicine, our immediate thought process is, is Is there something that's specific for me or for this person? Or is it a one size fits all. And if we if you don't have those stories, you don't have that knowledge, you just thinking? This is the same medicine that everybody uses. So I think we have more of that knowledge. On the back end, there'll be more interest, I think, and the models that will say, let's, let's ensure that we are more inclusive with the testing, and you'll get more people who will raise their hand and say, I'm willing to come in and provide a level of genomic participation for this because it's important for me and a family member in our community.

Lindsay  14:26  
So it touches on a lot of really critical topics there. And I think it's a it's a good segue to what I was hoping we could jump into today. I think when we talk about barriers to clinical trials, typically they're characterised as access, trust and awareness. And when we think about research is it falls into those buckets, when that's when you get a drug. Right? And we're talking a little bit about the work that has to happen beforehand to make sure you're represented in the work that happens to start getting on the path to finding new treatments and to getting there. For those of you on the call who aren't aware there have been really important findings around not even just go Genes, but how different genes in your body might affect your ability, your diagnosis. So there are genes, for example, that are more common in African Americans and Hispanic individuals that maybe will make it look like your HPA one sees under control, and it's not. So you could have uncontrolled diabetes, but your doctor is looking at a number and they think that it's that you're under control. So it can exacerbate your existing conditions that are there. C reactive protein levels are some people and populations that have a lower baseline C reactive protein. So you might go for years with something like lupus or RA, where you're looking at your inflammation in your body as a marker for diagnosis and saying you're just below the threshold, you're not quite at the threshold. I don't think that's what it is. But you're actually going untreated, then for something that has a treatment you could you could get access to now. So there are things that fall into those buckets, then we have sites, we have access we have where the genetics, testing can get access, how people can get access to that you have awareness, and then trust, which is something we talk about a lot, though, I do think that trusted for me anyway, kind of falls on both sides, right? Where it's there's the assumption that people maybe don't trust the medical establishment and therefore wouldn't be interested in participating. So the ask is never made. So we can we can get into that a little bit. In when we talk about genetics, we talk about access to genetic testing, that home genetic testing, becoming really widespread, we have a test, there are a lot of other people that have tests, access becomes maybe less of a thing in terms of the actual logistics of can I get a test if I go onto the internet, but there's still other access issues. So when I say those three buckets first, do you agree with the buckets? Do you think they're too narrow? Do you think there are other buckets that maybe we as an industry have just totally missed? And would you where would you put the emphasis here in terms of why aren't we? Why are we missing the boat? Because I don't necessarily think it's a lack of interest in participating? I think it's a, it's how we're structuring the ask. There's a lot of questions all at once. So kudos to whoever wants to jump in on that.

Dale  16:56  
Yeah. Well, let's, I'll jump in on the bucket question, which I think at the end of the day, I interpret that as in, are we identifying the most important aspects of this very complex issue? And I think we are, the economic bucket is one that I would add to that mix. And when I say that, right, we clearly there's a costa to precision medicine, and there's a cost to doing these tests. And there's a cost also with the patient side, and whether the insurance is going to pay for it. And unfortunately, we live in a world where it's not always driven by the patient needs and outcomes, sometimes economic models are there. And you know, if to the point they have any made if just running a basic genomic test to see if I have the right medicine for me, it's gonna cost me a few $1,000. You mean, even for some individuals, just a few $100? The answer is going to be no, just just give me the generic. And so I think we have to, in any discussion, talk about also what is the economics that maybe needs to change around this as well, too, maybe too much for us to talk about on this panel. But I would just add that is an important part of the bucket or an important bucket.

Natasha  18:03  
Yeah, I would agree. And I think the kind of when we look at health systems, those systemic factors that, you know, are preventing people from being able to access access health care, and not just access, but have, you know, a good health care experience. And I think a lot of these factors, which then links to, you know, trust and those kind of factors. I mean, I agree with you, Lindsay, I think there's there's often a assumption made about, you know, trust, and I think it's become a bit of a, you know, people talk about trust, without, I think really, yeah, I guess, like fully understanding, like, where that where mistrust comes from. And I think it can often be used to, I guess, put it back on communities as if it's like, their problem, that they're not participating. And I think that's completely, you know, the wrong way to look at it. And it's not about, yeah, we need to, we need to understand that and address those things, and, you know, rectify those things and build trust within within those communities. But I also think when, you know, we think of, you know, socio cultural factors, like, you know, having a genetic test, to your point data that people need to be aware of why and understand why, like, what, what's the benefit? Because why would you, you know, engage in this if you don't see, you know, a benefit. And that's not to say that, you know, it has to be an individual, you know, benefit, but what's the benefit for the community? What's the benefit for, you know, wider research, not just now, but in, you know, several years and I think often, we don't take the time to explain that and talk about that to people. We don't take the time to ask, Well, what benefits would you want to see from this? Because that's also something we need to understand is well, what is a priority to communities when people haven't even got basic access to health care? Why would genetic testing be a priority when And they can't even access basic medication. So I think we need to, you know, ask ourselves, we need to challenge ourselves and, you know, ask ourselves those questions and look at how we can, you know, if we're wanting more people to engage, what are we giving back to people? And how are we, you know, helping their lives for what they need right now, not what we think this could be used for in 10 or 20 years time, we need to have some tangible benefits for people now.

Ebony Scott  20:28  
Yeah, just want to I completely agree. And I think, you know, Dell hit it, like, we have to add economics to it. And also, I think, just to really touch upon implicit biases, you know, a lot of times the focus is on the patient, the patient doesn't want to be involved because they don't have the education, the awareness, or that's not the priority. But a lot of times in the work that I am currently doing and have previously done, you really need to take a look at what is happening in these clinical trials settings, or what is the relationship that the person has with their primary care provider. I think sometimes it really starts with preventative care and the relationship they're having when they are seeing their doctor. In the beginning, I did a lot of recruitment for 10 years for trials. And unfortunately, you would see that these patients are and I will include all of us, we're seeing our doctors, you may be fit into a 2030 minute time slot. And so the main goal of the provider is to increase productivity, I used to hear that so many times in these hospitals that we have to increase productivity and see 10 to 15 patients a day. And unfortunately, there are other you know, primary conditions that take prevalence. And so doctors are not speaking to their patients that building that compassion, not building that trust. A lot of times they are not going to like they don't even know the patient's name like they were, they're looking at the EMR right before the patient comes and sits in their chair. So there's a lot of things that, you know, we can do in the beginning, so that when we are introducing the concept of the ideas of clinical trials, or any type of research, it's that relationship that is formed, like I completely feel I understand the restraints or constraints sometimes that, you know, primary care doctors have because they are really overburdened, and there's a lot of stuff that they have to speak to and a lot of conditions. But I think, you know, if we really want to move towards more patient centric or community based care, we have to implement some practices where it's just the basic human compassion, like getting to know your person not knowing that you not say you have to know all of their business, but just understanding some of the factors that are impacting why your patient is not taking their medicine or why they prefer to go to emergency rooms for care and not see you there's so many different things that you know, can we touched upon, but I think really taking that step and the first step is preventative care can really push this needle forward,

Lindsay  22:58  
even thinking about to that point where where people are accessing care. So you have community based health centres that are often not included in the research process that that's where people will go one because it's convenient to it's your neighbor's son to have a relationship there. Who's Who's your provider, I had a conversation with someone deferment this week, who said that she tried to screen for a clinical trial for diabetes that required her to see an endocrinologist three times in a four month period. But she said to see an endocrinologist, it takes six to seven months to get an appointment in the US because we have a major physician shortage right now I think it's probably similar in the NHS, and I have a long wait times. And that she just used the diabetes educator. So if she could, she said, Listen, I'm seeing someone getting care, I'm getting continuous care from a trusted source. I talked to this person, they know my case, they know my history, but they didn't count. It didn't count for her because she had to go see the endocrinologist specifically, who was someone who to your point Evany. Centre for a lab before the appointment read the lab result in the EHR before she walked in the room told her the results in left because it's less than a five minute appointment often here. Here in the US, it's usually five minutes per patient that have physicians allocated. So any reactions to that doll or Natasha, and to what ebony was saying about physician relationship?

Dale  24:13  
Yeah, I think you have an opportunity for some entity to come in and try to feel that that role, right? I mean, can you change the system in terms of providing greater time for patient interaction and have that time, right. I mean, I would venture to say it's gonna sound kind of pessimistic that this system is not going to allow you to make that change. But it presents an opportunity for major healthcare organisations and payers and entities to think about how do we provide this additional support to individuals? I mean, even just using your example, let's see about setting appointments, right? If it's that challenging, but it's that significant in the process. Maybe there's an entity that either already exists or that can be created on a platform by a tool that could help facilitate this process of going and looking at the appropriate locations and asking someone, how far are you willing to drive for an appointment or do the things that they're doing this automatic searching and matching and notification when something opens up as an appointment. And I know, I'm just using that as an example. But this is where I think innovation can can help address some of these issues. But it's going to require someone to not just accept that things are the way that they are, and say, that's the way it is. And so I think innovation, and having people fill these voids is one way to address all these issues.

Natasha  25:33  
Yeah, and just to build on that, I think, I guess in parallel to that I think it's about or something that is important is making sure that, you know, local grassroots community organisations have the funding that they need to be able to provide that support. Because I think, you know, there are organisations that exist to support people to navigate, you know, through through healthcare process, but processes, but you know, the problem is there's not there's not enough of them, and they don't have the resources to be able to, you know, kind of necessarily deliver that at the scale that that is needed, or in the way that it's needed, or, and or it's often relying on the goodwill of people in their communities to do that. So I think as well as Yeah, that what what Dale was mentioning, we need to also look at, you know, how can we, again, equip communities to be able to do this, because again, linking to trust is going to, you know, these, if it's coming from someone in the community who is already trusted, then I think that yeah, is going to help with that, you know, those those relationships building and people are going to be, you know, more on board with, with what's happening. And they also know, their communities, they know what the needs are, they know what the specific challenges are, that are because I think we you know, sometimes we're good at grouping people, aren't we, which is helpful. And you know, it's helpful in some context. But I think when it comes to Yeah, when it comes to health care, and research, you know, we need to look at an individual circumstances, you know, very much determine their availability, and, yeah, the opportunities that they're gonna have so and people that are, you know, within those communities, that kind of best place to then support people through that,

Dale  27:13  
I think there's an opportunity for greater awareness of lived experiences. And in my mind, right now, I'm looking at something that would be an intersection between lived experiences and innovation. So if you think about that, right, it's this idea of like, we can look at the system and know where it's not efficient, where it's even broken. And there's a whole lot in the system that just says, that's the way it is because we don't have a solution. But if you take people's lived experiences, and you take innovation, you bring those two things together, I think you could start to identify some really unique ways to address some very specific bottlenecks and inefficiencies and broken aspects of the system that don't require a total change of the system. So I know that's still conceptual discussion, I'm not getting into specific details. But that community, when we keep talking about community, I think one of the things we're talking about is an understanding of people's lived experiences. And then when we're talking about these deep rooted problems that have existed for many, many years, big innovations and a way to address those and bring those two things together, I think some magic can happen.

Lindsay  28:11  
I'd love to shift us towards exactly that. I think everyone's trying to get on the train of how do we address this because we, it's, I'm famous for mixing and then totally flooding metaphor. So bear with me help this one works out, we we as an industry know that we need to have better representation across the board. So in genetic studies and clinical trials, etc. So it's this squeaky wheel. But it's not telling us that it's squeaky and then on the other side, you have the patients can't wait movement, the you know, we have to move faster, we're I think we're seeing more and more pharma companies biotechs, adopting that Silicon Valley mindset of, you know, get it out there move fast, be agile, in pharma land sites, it's still pretty slow, but it's a lot faster than it used to be. And so that's getting a lot of attention in and over here. Everyone's been saying, Hey, I'm happy to help. But you need to give more attention. You need to be in my community, you can't just pop in and pop out when you need me for something. Okay, I want this longer relationship. So how do we start then thinking about solutions? How can we accommodate both of these? This is the long term play, right? I need you to have a relationship with me. Because we've had a really complicated history in the past, we can send out links for people on the call, who may not be aware of what we're talking about with this the historical, and not so historical, pretty recent incidences of mistreatment and unethical practices and research with people of colour. So we can send information out on that. But how do we accommodate that need for trust building, which takes time you can't build trust overnight, with also this trend towards we have to move faster, we need to get things out or accelerating all of these these trends and these new types of development. It's without exacerbating the inequalities that already exist,

Natasha  29:54  
just going to fly. I think we need to think about the impact that the way that we do things has on People. So for example, when we think about policy data sharing, like from, you know, a scientific point of view, the more data that can be shared, the better kind of thing in terms of if we can, yeah, people can take part in genetic testing there, the data can then be used not just for that research, but for other, you know, studies and things like that. So from a scientific point of view, you know, that's, that's great. But then, yeah, when we look from a community perspective, and from the perspective of the public, the you know, that, that actually having those kinds of, you know, very broad consent policies, for example, can actually mean that that puts, you know, a proportion of the population off and, you know, for very good reasons, and if we don't take the time to talk those things through, provide people with options, so that it's not either you're all in or you don't get access to this, then yeah, we are going to, again, continue to leave people out. So I think, and I think some of those kinds of factors are not necessarily thought about the implications of where we want to get to, with science versus where, you know, we actually are now in terms of involving people, and when we think about how, yeah, how the data is going to be used, whether it's for something now, or whether we're building a database, which is then going to be used for, you know, research in, you know, 510 years time, again, for, for the public. What does that mean, like from a data perspective, and that, again, can put people off, and I think, you know, the we're, we're losing, you know, the six next significant proportion of the population where that is a real concern. And, you know, a lot of those populations are probably going to be people that are already underrepresented in research. So again, by having those kinds of these very kind of broad policies, when it comes to data sharing, just as one example can mean that we are further exacerbating, you know, the inequality. So I think we need to not think of these things as separate, but actually think about how does the way we do things? What is the impact for different groups and actually be specific about that? And then, you know, take steps to then, you know, address some of those issues?

Ebony Scott  32:09  
Yeah, I think just to add to that, I think, you know, we have to recognise we're dealing with people, you know, these are human beings the same way, you know, things pop up in our lives every time and we're not able to go to a doctor's appointment or go to a meeting, we have to recognise that we are all people and we have to treat others as such, I think the issue is that we're not being intentional in our approaches. It's not about how fast or slow but the attention, ality and the thought that is given to it. You know, one, and it's not a novel concept we have been doing this and translational research is community based participatory research, and that the person, not the patient, but the person is seen as an active participant from inception of the protocol, all the way down to the data analysis. And I think having that voice having that expertise throughout, you know, our programmes and initiatives really will bolster innovation, creativity, and all these things that we hope to capture within the healthcare. You know, a lot of times with our communities, they're not being approached until a protocol is fully developed, until it's time to recruit the first participant. And then you're faced with the conundrum as to why aren't people jumping at this idea to participate with me, it's because you never gave the time to even introduce the concept or speak to them as to if this is a priority in the community. And this is something that we are really taking an attentional approach at lupus Research Alliance and lupus therapeutics, and the development of project change, and that the participant or the person living with lupus is just as valued as the researcher just as valued as an industry sponsor, and that their expertise is not even less is not less than because lived experience is extremely important when we're thinking about the development of programmes, the development of therapeutic treatments to help their conditions or so I think, you know, taking an approach that we have to be intentional, what we do is extremely important. Additionally, a lot of times we're doing this work in siloed, there's no cross communication or collaboration, I'll speak specifically to lupus, and that many times, you know, we have this novel drug or we have this novel programme. But many times I can look back 10, even 15 years ago, these are not novel ideas, but unfortunately, once that team or that person leaves, then those ideas and those programmes are ended until it's, you know, someone dreams that up 10 years later. So I think it's really important to have this cross collaboration, as well as value the lived person experience just as much as we're valuing the research or the pie who wants to academic medical institution In?

Dale  35:00  
Yeah, I think it'd be really interesting for this industry to take this lived experience approach. And before anything it's done in terms of this process, it has that lived experience test to it. Right? Like, like it has its test of, did you involve someone who is actually going to be going through this process in the development of the process? And even if you did not, did you then test it significantly out on people who are going to be using it and evaluate the effectiveness. And it's amazing. I mean, we, we had a project where we had a company come to us that was interested in in providing genetic testing to certain groups that have been underrepresented. And we picked up the project with them. And one of the earliest things they were looking for us, I have to show that you had a primary care physician, and you had to list their name and their address and their telephone number before you move forward. And we were able to access engagement, and people will raise their hand and say, yes, I'd be interested in doing this, you know, from an awareness standpoint, but soon as they went into the process, it was like, the this is not my life, where I have a primary care physician that I can just call. And so you know, from working with the individual, the company, we were able to kind of talk to them about how they get modified, where that fits in the process of what other options, the still meeting compliance and regulatory compliance, but change it to increase the conversion rate and the passer rate. But if we were looking like this that actually tested the process tested someone before opposite, you rolled out this massive programme. So I think we have something is trying to figure out what is what is this potential solution set, instead of just talking about the problem, I would like to advocate based upon what you're hearing here that this industry can think about a lived experience, participatory part that someone in the individuals lived experience helped develop the process, but also a lived experience in terms of the actual application? Does it does it hinder what we're trying to do? I think if the industry took that approach, you'd see a lot of things changed.

Lindsay  36:54  
And I think sometimes when we talk, I just want to be clear, sometimes when we talk about diversity, it can be code for we want like different races involved in the research. But it can also be things like geographic location, where the vast majority of Americans live very far from doctor, Research Centre for sure. It's really on the coasts, where you get a lot of those academic with, with some with some people in the middle academic research centres where a lot of this work is happening. So we've mentioned before the community based health care centres, we talked a little bit about, you know, decentralised clinical trials, there may or may not be some benefits there. I think that, you know, there's some benefits in terms of access for geographic diversity. But there are some questions still about whether people want to be going into a research centre and seeing a doctor instead of having someone come into their house or shipping a box. And so when we think about that logistical bit, and I'm starting to get into the q&a bit, so this question came came from Kimberly, so how can we start considering some of these factors and ensuring that research is actually accessible to people? When we're planning studies? I think it could go beyond the community, but you know, thinking about geographic, racial, ethnic background, age, etc. Yeah,

Natasha  38:12  
I think to Dan's point, it starts with work with people to design the research and design the trials, because then they will soon tell you what will not work or what where you might have to provide additional support, or you know, and again, I think, to everybody's point, we need to recognise individuals, not everyone is, you know, you're going to need people are going to need different things in order to enable them to take part. So how can we, yeah, how can we provide that as part of the trial? So I think working with people to design the trial, getting input at an early stage, in the trial planning, not, we've got everything sorted, the protocol signed off, let's just check and see if there's anything that you know, is gonna cause an issue here, find out there is, oh, we can't change it this time. But we'll change it next time. Like, we just need to get away from that, and move towards, you know, involving people in the earliest stages of development. And, you know, often there was so many, like, practical, it's often the practical factors that come up of Oh, yeah, how am I going to get there? How often do I need to, you know, how many visits are involved? You know, now we've got, you know, particularly much more options, people don't always have to go somewhere, you know, we can send things out in the post and, you know, that that makes, you know, research much, much more accessible. Having said that, there are some people who, you know, will want to be there in person. So, I think, you know, we need to be careful, you know, kind of the decentralised trials approach isn't, you know, that's it, it's done research is now accessible for everyone. Definitely not. When we look at digital as well, you know, we've still got, you know, significant numbers of populations that don't have, you know, access to digital aspects and for trial, so I think, yeah, that's something which we need to look at as well, but I And I think ultimately, if you work with people, you know, patients, patient organisations, community groups and get them in as experts in the clinical trial process, then you know, that's going to mean, it's not to say that we can solve all of those these problems, but it certainly means that we have an awareness of them. And we can then, you know, advertise the trial accordingly and be upfront about here's what's required, because I think that's something which is an issue as well, like, you know, to Dells example, great, we're on board, but then actually, we'll know this, the way that it's set up means that actually we can't be involved in this.

Dale  40:37  
I think she said it so well. And he's such a great play camping, and I don't want to follow her, we just want to say exactly what Natasha,

Lindsay  40:44  
I want to point out, I recognise a little bit beyond what we said, if you all have a few minutes, we have a few more questions to work through, people need to jump off again, we'll record this, we'll be sending it out. There was a question that's sort of a follow on to that, which was about how do we get people excited in research, and I think obviously, involving people is important critical to getting them engaged. There is also this trend that we're seeing specifically in genetic research where researchers are saying, or asking people for their for their information, but then maybe, and they have a discovery. So they find a gene, but they're maybe not sharing that with the individuals if they have that gene or not. And I am curious about your reaction to that. I have my own thoughts. But I'm curious about your reaction to that and how to manage those types of conversation in the community. For anyone who's on the line who might be involved with that type of engagement?

Ebony Scott  41:37  
Well, I think So earlier this week, Google had its health equity Conference, which really spoke to a lot of these themes. And it was really great. And one of the conversations was around like sharing the results, even if it's statistically significant, even if the trials not so whatever, sharing the results with the community. And I think it's really important. And even taking a step back, sharing what research is, a lot of times we're using clinical trials, DCT all of these different terms, but a lot of people and not just speaking about underrepresented communities, they don't understand the importance or impact. You think about like all of the advertisement and all that thing that wants into to getting a COVID vaccine. And I think if we take some of those fundamental, you know, advertisements in different ways that we wanted to put the information out and apply that to clinical trials research more broadly, then we're starting to engage different communities. I think that is not that they don't want to join research. But you know, there's just that under lack of understanding of why is it important for me, it may not benefit me, but it can embedded benefit my great great grandchild, so later down the year or down the line. So I think it's important, just having, you know, regular conversations with people, and that can bolster engagement and excitement. Many times I'm having these conversations within my own family, you know, I've been in the space for now 14 years, and they still don't understand what I do. And I'm like, what exactly are you doing? Like, I know, you're not a doctor, I know you're not a nurse, but you're in the healthcare system. Cracks me up. So I think it's just like taking a step back. And decentralising our conversations and and just really hitting key points and having those conversations and I really, I asking companies farm are all like really taking that engagement and being intentional on it and starting to have these conversations, I think that can bolster engagement across the board,

Lindsay  43:41  
think Evany did the comprehensive answer. First of all, same situation, no one understands what I do for a living. But also, I think, when I said I had my own opinion on this, I think that this is akin to when people don't find out the results of a clinical trial. So they've given all this time and energy to something, you're sharing something very personal, which is your DNA. And then it's Oh, we made this discovery, thank you, you don't necessarily benefit from it on a personal level. But But I think sometimes those practices, feed them the assumption that this company is going to come in, they're going to take my information, they're going to use it to make billions of dollars, and I'm not going to get anything from it. So for me, I think that's a very tricky setup. And I understand there are reasons for it. But we need to be really clear as to why and the communication and have other benefits that are significant, whether that's at a community level or just making a really good effort to bring that information back and have a dialogue with with the community. There are a lot of very good questions that have come in. I don't think we're going to have time to tackle them all. There are some that I can answer because it's more logistical questions about the US healthcare system. There was a very good point made about talking about diversity coming in with race and ethnicity. I think one thing to clarify is that ancestry does influence your genes so we could win We talk about diversity. When we're talking about genetics, your ancestry does influence your actual genes. So there is an association to certain communities from an ancestral perspective, or genes are more common. So we can't say that there are no genetic differences between races and ethnicities, because your I have things that are particular to my Norwegian heritage, for example. So so don't make the assumption that there wouldn't be differences in communities. It's just it's not because of the colour of your skin, it's because of where you've you've come from and who you've come from, and that there are also social determinants, and we need to make sure that we don't obscure social determinants. Obviously, we talk about gene environment interactions all the time. So we need to make sure that we don't obscure the social determinants. And I think that's a very good point for that. But I do want to clarify that there are there are differences by ancestry for this. Can I answer that Lindsay,

Ebony Scott  45:50  
and just specifically for lupus. So there was a cohort study that was done in the 1990s. And it was with the University of Alabama and a few other institutions where they wanted to look at ancestry specifically rated related to lupus severity and progression. And it was found that in addition to the social determinants of health, those participants who had ancestry related to African, Asian or Native American, unfortunately, they had a more severity or the progression of lupus. So we saw a an end stage renal disease and other more severe progression are severe conditions related to the ancestry. So yes, we have to understand that social determinants of health definitely has an impact and on the severity of diseases, but there are also ancestry links, and people who come from this, these genetic backgrounds that are more prone to developing the disease as well as the severity of the disease,

Lindsay  46:49  
similar to pm Pele three with fatty liver. So then are very quick, Round Robin, I want to cede the floor to the panellists. You've all been phenomenal. Thank you so much for your insight and for sharing sharing this if we didn't get to your question, we'll we'll address it after closing thoughts. One suggestion to anyone listening who's running studies, and how to, to move the needle with their work. But

Ebony Scott  47:16  
I would just say keep people in mind that you're doing it for people and not robots, and that overnight apps, and that, you know, keeping people at the forefront and understanding that, you know, people everyone comes from different backgrounds, different experiences, but really elevating the condition, you are testing, really elevating the people who are dealing with that everyday condition because they can provide insights that unfortunate others cannot. So we should always keep them in the mind in any type of therapeutic development initiative or programme.

Dale  47:50  
And I will piggyback off of what ebony said. And double down on something I said earlier, which that lived experience that comes from involving people, there's an opportunity to to take that lived experience and to combine it with innovation. And when I use the word innovation, I'm sometimes just talking about a new process or a different process versus some cool technology. But there's so much this is the way we've always done it in the industry. And, and we all know the definition of insanity. I think sometimes we see that play out, which is wanting to have more representation, wanting to have more inclusiveness, but doing the same processes over and over again, and then scratching your head and you don't get that. So I think lived experiences with some level of innovation is what we need to adopt in order to change the outcome.

Natasha  48:35  
Yeah, and I think following on from that, that's going to require investment. And, you know, I think companies need to invest in this work. If we you know, if you're really serious about addressing under representation, then yeah, make the investment now, and think long term. Don't think you know, short term, but actually think about long term. Invest in those, you know, partnerships, building that trust giving back to the community, because it will take time, we know, you know that that will take time to build those relationships. But it will mean that we're all much better off in the years to come.

Lindsay  49:10  
That's a perfect note to end on. Thank you all again so much for your time. Thank you to everyone who was listening. And again, we'll work to address the other questions that have come in during the course of the conversation. Thank you, again, have a really wonderful rest of your day. Whatever time zone you're in, whether you're just starting you're about to end

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