54 - Elizabeth Dreicer - Consuli, Long Covid & research

Episode 54 of the Long Covid Podcast is a chat with Elizabeth Dreicer, CEO of Consuli. We chat a load about what Consuli does, and the study into Long Covid & immunology with La Jolla Institute of Immunology.

It's a fascinating discussion so really interesting to everyone!

Consuli.net
Consuli Long Covid Study Information
La Jolla Institute for Immunology

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(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  0:00  
Hello, and welcome to this episode of the long COVID Podcast. Today, I am delighted to welcome Elizabeth Dreicer, CEO of Consuli, who are partnering with La Jolla Institute for immunology to do some research into long COVID. And we're going to chat a load around that. So welcome to the podcast.

Elizabeth Dreicer  0:19  
Really good to be with you, Jackie.

Jackie Baxter  0:23  
To start with, would you mind just telling me a little bit about yourself and what it is that you do?

Elizabeth Dreicer  0:28  
Yeah. So by way of background, I've been leading data and science companies for about three decades. Everything from enterprises to social enterprises, also spent a couple of decades in health philanthropy, and been around the ecosystems from startup to scaling to sale, in that sort of professional frame. 

On a personal note, however, I frame my work streams and life, really, from the context of you know, my deepest desires to see progress, you know, to lift and shift humanity, and mechanisms for that, that I'm involved in and in my portfolio of life now include building companies, I think there's still a lot that can be done through that mechanism. Also communities - I'm involved in a number of projects, including the future design initiative, environmental entrepreneurs, Singularity University, and then locally, Alliance Healthcare Foundation, I still spend time there. And then the third swim lane is around stories, you know, how do we re-narrate ourselves to the future that we all need and desire? So the theme that runs through it all is progress. And that's what drives me in all aspects of life. 

Jackie Baxter  2:02  
Oh, wonderful. So would you be able to tell us a little bit about what Consuli does?

Elizabeth Dreicer  2:10  
Yeah, absolutely. And maybe also helpful to understand the context of how Consili came to being. Ultimately, the sort of big macro idea of Consuli is to deal individuals into the data economy. And that was the sort of biggest expression of the idea. And the first place where we are doing that is around health data. And then very specifically, as this epoch of Consuli, was born right at the time of COVID. It's been connecting and matching individuals to clinical trials, we realize that despite these humongous databases, and patient registries, there's still this challenge of getting individuals connected to trials. 

And I was super surprised to learn that between one and 4% of people ever participate, because most people are never asked. And it's not just clinical trials, like vaccine trials, it's also data trials. And if you think about it, data is powering our world, right, that is the way in which mankind is learning. And it becomes quite relevant to think about, okay, how do we get more people engaged in learning, right, engaged in helping us build the ladders of human knowledge? And when we started, we went out and we asked a population sample of individuals in North America, would they be willing to participate in research, data or clinical, and universally across every region? Between 83 and 84% of people said, yes. So we have this humongous chasm between the people's willingness and what's actually happening. 

And you sort of deconstruct that and you realize that the mechanism by which people are engaging in any sort of research, first it typically goes to the corridor of the busiest people on Earth, I think, which are doctors. And this limited time that one has and if you happen to go to uh, you know, place, you know, large teaching academic, hospital or or clinic, they may be running trials, but if you're out in, you know, lots of just primary care, or even specialty care that doesn't engage in those trials. You never know about it, your doctor never talks to you about it. So there's this huge inequity that occurs also. And that affects the kind of medicine - whether it's, you know, we have women wildly under represented in most trials. Also bipoc people, people of color, and indigenous background are also underrepresented. So how do we how do we start to shape shift that and so Consuli, Yes, again, centering in the why of helping, you know, activate equity and fairness and dealing people into this incredible future, which data is for humanity.

It's a new tool, sort of the new capacity to learn, I think about an analogy I think about with data that I think is really gettable is, you know, we've just launched the Webb telescope right out in space. And what is it doing, it's got this great surface area, it's collecting a lot of light. And that collection of light is data. And that collection of longer, deeper light gives us answers that we would otherwise never have. Hubble did that before, you know, ground telescopes, you know, 100 years ago transformed our understanding of the heavens, right. And we're in that same sort of journey here with data. It's like we've, you know, mankind has gotten this incredibly giant, new tool. And that's a huge piece of how we're going to advance. And how do we think about getting this information more readily having more participation, more fairness, more equity. These are these are things that, you know, drive Consuli. 

We are a public benefit company. And so we're a membership organization, people can join us. And they identify if they want to participate in any kind of research, including clinical as well as data research, we become their agent, we operate a marketplace for members to make offers to them in a way that is suitable for them. So it's done for them, not to them. So it's not an extractive process. And we try to make sure that it's all equitable, and that it's advancing our understanding of the world in a equitable way, where we have proper representation, there's proper fair trade, you know, think of it is like fair trade for your participation, you know, is this participation worth 500 or 3000, or, you know, 100, or, you know, whatever that. Or maybe you do it because you want to advance research, there's no money involved, but you're, you're choosing to donate your money to charity, or to your favorite disease organization, you know, places like the long COVID Alliance, and there's a plethora of organizations that have just been born in the last couple of years that need resources in order to do the important work that is underway. So I know, that's a long soliloquy and a long answer to a very simple and short question, Jackie. But that's what we're up to here at Consuli.

Jackie Baxter  7:54  
No, it sounds amazing. It's it's really, really fascinating. And it's, it's really interesting, because I think you're right, it's not unwillingness, I mean, speaking for myself, until I got ill with long COVID, and started speaking to other people and meeting up with some of them, virtually, obviously, I didn't even realize that research was something that I could be involved in, you know, I'm just me, what could I possibly have to offer to research? But actually, a lot, as it turns out, but I think a lot of people just don't really realize this. And then you've got on top of that, you know, are they actually able to, depending on their circumstances, as well. So as it's fascinating, isn't it? 

Elizabeth Dreicer  8:40  
Indeed 

Jackie Baxter  8:42  
Yeah. Are you able to talk a little bit about this long COVID study?

Elizabeth Dreicer  8:46  
Sure. Yeah. And I should just mention that, you know, Consuli vets all of our studies, our membership body, we have advisors, bioethicists, etc. So we don't just take any study. Again, we're a membership organization. So there's a threshold by which we look at studies. So just know that this has been reviewed from that context, we look for reputable organizations that are doing research that has potential to create important findings, the La Jolla Institute for immunology, which just so you know that our relationship with them is purely based on trying to advance the learning for the long COVID community, but they are a reputable organization. It's been around for a long time doing amazing work. 

And when we learned about their interest in studying people with long COVID, who also had and have neurological lingering symptoms, and that they were going to look at this issue very carefully to see if there's any way to distinguish that, you know, ultimately leading to, maybe there'll be biomarkers, maybe we'll learn, you know, certain circumstances in which this is more likely to occur, versus others. You know, like lots of research, one doesn't know exactly what the findings will be other than that there is this commitment to try and understand what is going on. For patients that are experiencing. Neurological, people sometimes call it brain fog. But it is far more than that, as you may know, from your podcasts and from your own experience. It is a substantially debilitating, and arresting you know, in terms of people who go from very, very high intellectual functioning, to all of a sudden having difficulty reading and absorbing. And this is, in some cases happening in a matter of hours and days and weeks. 

So, that's the research that's underway by one of the world's leading institutes that we wanted to lift into our community and help make sure that they found these important patients. And unfortunately, as you probably know, from your own time in which you had COVID, in March of 2020, I believe, yes, 

Jackie Baxter  11:14  
yeah. 

Elizabeth Dreicer  11:14  
And then the long COVID that has ensued thereafter. Many patients who have neurological symptoms that are lingering, weren't able to get a positive COVID test during the time in which they had the expression of the virus. And so as a result, it's a narrower band of people that are in this first body of research. And it's not just you know, it's not just this one place, but lots of studies are limiting the participation base to those who had a positive test. Because they need to be able to make findings, and publish those findings and be able to get to the next stage of research where larger studies can be done. And then one can have patients that have tested and have positive tests, as well as those who have clinical diagnoses that may not have received a test. And so we recognize that, you know, like many long COVID studies, this is just one of many that we're supporting. This particular one has an initial requirement of patients with a positive test. And I know there's a lot of people in the community are up in arms about that, and rightfully so. And yet, we still need to, again, make progress.

Jackie Baxter  12:36  
Yeah, I think that's one of those things that people like myself that, you know, were ill right at the start and, or didn't have access to that sort of testing. It's something that we sort of understand and sort of accept, but still find incredibly frustrating. Because, you know, often, in my own case, have been ill for the longest or one of the longest, and therefore have the most data to be able to give and yet we can't give it. So it's this idea of understanding but also, urghhh

Elizabeth Dreicer  13:06  
Yes, and it's why we need bigger studies faster. I mean, I think to that point is very important. And so research has a very incremental, usually long path. And for patients like you, it's deeply troubling. I know we, we certainly hear it from the community, and our membership, and it is vexing for everybody. And yet, this is where we are. And you know, the future is going to be these larger trials, where we're going to get a lot more of these clinical expressions. And the sooner we get there, the better. 

Jackie Baxter  13:43  
Yes, exactly. It's a step up, isn't it? You've got to start with your small study and whatever way that needs to be done in order to get to the bigger studies where you actually produce something or come up with, you know, big answers,

Elizabeth Dreicer  13:57  
indeed, and also funding tends to, you know, also drive these decisions, you know, a researcher who gets a funding that allocates a million dollars, they can't do you know, many 1000s of people in the study, they just can't do those. So there's a huge connection here to getting adequate dollars that many cases have been allocated. Like in the United States, there's big dollars. I know, in Europe, there's big dollars for this research. And yet getting these studies, quickly mobilized; the first ones and then getting the next ones mobilized. I think these this is the conundrum that is currently facing the entire field. 

And, you know, just to sort of speak into one of the issues that we think is a huge problem is that there is there's a lot of funding and there's special interests around certain ideas around funding but what we need is we need independent experts looking at every dimension of the research that's needed everything from how do we, you know, effectively do diagnosis longer term when, you know, people, you know, maybe they convalesced at home, and they, you know, had or didn't have a COVID test. And then, you know, many, many months later, or weeks later, they're starting to experience in the category of long COVID. And, you know, if we think about, you know, how can we discern, and detect long COVID, long after the virus has had its heyday, if you will, we need the swim lane of therapeutics, medicine that is currently safe and on the market for other things that could be repurposed. And that body of research is super important too, particularly for people right now. Because we need solutions right now. Right? We can't just wait years, I mean, there are patients literally dying, not just of the incredible taxation of long COVID and it's got all kinds of expressions, but also dying in the context of losing hope, feeling that they are left behind, and that the world is somehow moving on, and they should just move on with it. And so getting real effective treatments that help improve and create incremental progress is huge. 

And then you know, and of course, the primary research to really understand the etymology and all the sort of more foundational first principles work needs to be done too. And we need experts in each of these areas to flesh out and develop that racked and stacked order of priorities, and help guide the world community to be engaging in research in a way that is going to be maximizing the good that can happen as quickly as possible. 

So this is a scenario where we took all the dollars that the world has allocated in every corner, right? And we looked at all the research that needs to be done and discerned who has the budget to do what. I mean, this really just begs for coordination, which we haven't seen yet at scale. So that's something that we think a lot about; long COVID community members have certainly brought this to light. There's a role for the World Health Organization, there's a role for each of the government's health bodies that are overseeing these research. And there's a role for some sort of global, independent, you know, some folks have suggested maybe 100 people, you know, 30 in each of those three swim lanes, then change, and we could readily get to some sort of a rationalized approach that could help guide not just governments but philanthropy, private donors, right, all of whom, you know, the question that they're faced with is, Well, which one should I fund? Right? If you're a private philanthropist, or even an individual who wants to give money to research, how do you know which study should be done? In which order? That's most, you know, helpful at this moment?

Jackie Baxter  18:20  
Yeah, I mean, we were saying literally, just before we started recording weren't we, you know, how many studies there are going on at the moment into Long COVID, which is wonderful. But also, it's complete chaos isn't it?

Elizabeth Dreicer  18:33  
And those are the studies that are happening, which is one thing, but there's all these studies that have yet to start, that have yet to be funded. And so we have to think about, there's this upstream body of work, and there are certain labs and principal investigators who are struggling to get resources. And they have very important, let's say, therapeutic studies, where they, they need to discern whether current medicine that's already approved for one use can be repurposed. And those studies are really not getting the kind of attention that they need. And those are the ones that have the best chance of at least helping patients today. And unless those studies are done, we're asking doctors who don't know, to choose to, you know, script off label, which means that far fewer of those are going to happen because doctors, like all of us, are tending to want to follow the evidence. And so getting that research completed so that more doctors can provide therapies is super important. So those are, I could go on and on. But you know, these are the things that feel pressing.

Jackie Baxter  19:49  
Yeah, it's like a sort of two tier approach, isn't it? You've got to do something about the here and now but you've also you know, you've got to look at the bigger picture and what the underlying cause and all of that is, you know, and both are really important because, you know, you've got millions of people around the globe with very little quality of life or certainly reduced quality of life. And that's not okay. 

Elizabeth Dreicer  20:11  
Absolutely. 

Jackie Baxter  20:12  
So are you able to talk a bit more about the study with La Jolla at all?

Elizabeth Dreicer  20:18  
I think the important piece here is that like, so much primary research, there are hypothesis and questions. And then there's what the data show, and what information emerges from this research. And so I think we, and they, recognize that this is primary research. And in that context, we will learn things that we didn't predict we might learn. And so that's the stage of where we are at this particular moment. And time is obviously important here, the sooner that we can get the right kind of patients in to complete the study, the sooner that they can wrap up the research and take the next steps for the next body of research. 

So we're in that important inflection, where we have still got a need to recruit additional study members, and we're particularly interested in seeing a spectrum of gender and ethnicity. And so really a call out, you know, to all who have had a positive COVID test, who have neurological symptoms that are lasting more than three months, and who have been seen by a neurologist. Yes, it's really just the confirmatory, both tests as well as clinical data that support that, yes, this patient is experiencing neurological symptoms, and they're in this post viral state.

Jackie Baxter  22:05  
And they need to be relatively local to you as well, I think is that correct?

Elizabeth Dreicer  22:10  
Indeed, so Jackie, one of the important facets here is because they're gathering blood, biomaterial, it's important that that be proximate for a variety of reasons, one, the volume, so that one can go to their facility, it allows for them to take adequate volume, and additionally, so that the blood does not coagulate before they do all their tests. So being proximate and in San Diego, is important. Now, we have had folks go out to people who are too ill to travel, but in the geographic area that is local to San Diego County,

Jackie Baxter  22:56  
I will put that out. So if there is anybody that hasn't heard about it, then hopefully we could get you a few more people as well.

Elizabeth Dreicer  23:04  
Absolutely. And people have traveled actually from all over to participate, which is also a testimony to the interest from so many people who are suffering who want to see things improve for them, but also for other people. So we we've been delighted at the broad response of folks from all over who have come.

Jackie Baxter  23:28  
Yeah, that's wonderful. And it comes back to what we were talking about at the beginning, doesn't it? It's not an unwillingness - people actually are willing to do quite a lot in some circumstances. So it's it's more, maybe not knowing that or not understanding maybe,

Elizabeth Dreicer  23:44  
yes, absolutely. And, and I just want to speak for a moment about equity in this as well. And want to, you know, put a fine point on that. The people that have come from all over, could economically shoulder the burden of doing that. And it is important in the future, and one of the things that Consuli is thinking a lot about and activating around, is making sure that these studies consider mechanisms for true equity. And that means equity isn't about just the one size fits all, right, equity is about creating the ladders for people to stand on it so that we all achieve sort of a an equal representation. 

And this is so important in these studies, because what we find may differ among different whether it's ethnicities or gender and if we do not have enough representation, then we will not be able to understand as much and medicine and you know, both understanding and as well as the cures will not be as attuned to all the different expressions of humanity, so I do want to acknowledge that there's work to do in this arena. Typically studies tend to, you know, have a one size fits all price. And that is not a sustainable, equitable future. And we need to do more to adjust that. 

Consuli host conversations on this topic, we have a clinical trials discussion every month, with the field of clinical triallists, helping dialogue about what's needed and what practices need to change. We've certainly crowd sourced ideas and have submitted ideas to the FDA as part of their requests in the United States for ideas and submissions in their comment period for policies that are emerging in the United States around equity, in trial participation, recognizing that that affects the future, right, of medicines that are available. 

And we host discussions in the long COVID community where our theme is patients need researchers. And there we've built a large stakeholder consortium about patients from all over the world, you know, India, Africa, Australia, you know, the UK, you know, all over Europe, and even Middle East; we've had people from every part of the globe participate as patients and talk about the experience. And researchers who are working on the issue in those three corridors, whether it be you know, better diagnosis, repurposing treatment, or primary research, you know, getting at the etymology and the function. And then we have bioethicists. We have policymakers, we have people who are, you know, attorneys and disability, and, you know, insurance. And so we've tried to build this broader stakeholder community 

What is very interesting is many, many of the doctors and researchers are also long COVID suffers. So we have this incredible, you know, scenario where it's not an other, it's a lot of folks who are engaged in this work are also ill, and experiencing the issues firsthand. So it's powerful. And this is, you know, like your podcast, getting this information out, getting communities connected to each other and working together. I think that's where we're gonna see the change, and also the moral and and just spiritual and social support for one another.

Jackie Baxter  27:50  
Yeah, absolutely. And I think, you know, you've brought it back to kind of support at the end there. And I think that was one of the things that certainly I didn't have at the beginning. Because you don't do you, in the middle of a pandemic, and that is so so important, you know, in order to allow yourself to heal, is to have that idea of support and safety, I suppose

Elizabeth Dreicer  28:13  
I want to say thank you so much for hosting this important discussion. It has been an absolute pleasure to be with you. And I'm just heart warmed, and really appreciative of the global fabric that is then woven as a result of all people everywhere, all walks of life, living through this moment in history together, experiencing issues like this all together. 

And I think for me, and for our future, it's good that we're crossing continents or crossing cultures or crossing language, and finding a pathway together in our commonality. And, and in this moment of vulnerability, right, there's great opening and great opportunity. And so thank you for being part of that weaving, if you will, I see this these tentacles, you know, of these types of conversations, crossing all boundaries, all the quantum boundaries, and here we are connected through the spooky action at a distance that we we get to be at right? So it's, it's been wonderful.

Jackie Baxter  29:33  
Oh, well thank you so much for joining me. It's been absolutely fascinating

Unknown Speaker  29:38  
Jackie, thank you so much. And if anybody wants to, you know, to participate, we're currently in North America. And if you want to become a member of Consuli and join our movement, you can do so on our website, which is Consuli.net. Eventually we will be beyond our borders and we look forward to sharing when that happens.

Transcribed by https://otter.ai