Rae Woods (00:02):
From Advisory Board, we are bringing you a Radio Advisory, your weekly download on how to untangle healthcare's most pressing challenges. My name is Rachel Woods. You can call me Rae. We're in the second week of our series about bespoke care and innovation. Last week, we talked about our own predictions on the future of oncology, and we know that care is becoming more and more personalized or more and more bespoke with the eruption of new diagnostics and new therapeutics coming to the market. But this is not just about cancer, this is about all innovations that we will use in healthcare.

(00:39):
And this week, I want to talk about what that means from a health equity angle. I will be the first to say that when the industry has conversations about health equity, it can often kind of stay at the high level. But here at Advisory Board, we want to try to provide you with more actionable insight, which is exactly what I want to do today. I want to talk about what it means to embed health equity in every stage of the life cycles of new innovations because it is critical that we don't create or replicate inequities as we push for more innovation in specialty care.

(01:15):
So today, I'm bringing two clinical innovation experts to the podcast Advisory Board's own Amanda Okaka and Fanta Cherif. There's a bright spot that I want you to pay attention to because precision medicine may actually be an opportunity to advance equity. Hey, Amanda. Hey, Fanta. Welcome to Radio Advisory.

Fanta Cherif (01:37):
Hey, Rae. Thanks for having us.

Rae Woods (01:39):
Fanta, it strikes me that this is maybe your first time on a traditional podcast, but you've actually been on stage with me doing this live. Is this version of a podcast more or less pressure? I hope it's less.

Fanta Cherif (01:53):
I kind of feel like it's more, but-

Rae Woods (01:55):
Why?

Fanta Cherif (01:55):
... I don't know. Because it's so much easier to just have a conversation face to face. You're able to just converse back to back really easily. Also, our panelists were great, so there was just a lot of chemistry in the room versus us just being-

Rae Woods (02:09):
Versus Amanda here. No pressure. Got to step it up. Well, I'm happy that the two of you have come together to have this conversation with me and I want to acknowledge an elephant in the room immediately. So we know the healthcare business, we know that medicine ultimately has one goal, right? We want to promote better patient health. We want to create better patient outcomes. In fact, that's the core idea behind a lot of the innovations that I want to talk to the two of you about today. But we also know that healthcare is not immune from systemic inequities.

(02:46):
We've actually talked about this on the podcast quite a bit, and I do want to remind our listeners that healthcare's history of racism persists today in the structures that we use to deliver care. One example of this is the long-standing practice of race-based medicine. I'm not sure that our listeners actually understand what that means or maybe they're even familiar with that term. So level set for me, what is race-based medicine? Why is it something that is harmful?

Amanda Okaka (03:13):
I think that this is a term that gets thrown around a little bit, but it can be hard to find. So race-based medicine is basically, as you said, our current practice where we use race as a stand-in for what we know are complex, biological, genetic, social, environmental differences that contribute to people's health problems and health status, et cetera. So it is really harmful because it prevents us from actually addressing what are those other issues that are contributing to someone's health status.

Rae Woods (03:46):
Can you give me an example of how this might show up in innovations and medicine and care delivery? How does race-based medicine show up?

Amanda Okaka (03:53):
It's honestly baked into the foundation of medicine, and I don't say that to sound pessimistic, it's just a fact of reality. A lot of the modern medical knowledge that we have came from really dark roots, a lot of experimentation on slaves and other people that could not consent. So, it's baked into the foundation and one of the most obvious ways that it manifests is with the use of race-based corrections that we see across different types of disease states in medicine. So like kidney disease, pulmonary disease, obesity, maternal health, other cardiovascular diseases. We see that race-based corrections are used where they are accounting for race as a biological difference in the outcomes of measures according to those diseases.

Rae Woods (04:50):
And my understanding is that when we're in the early phases of developing something like a product that's going to be used to deliver care, that it even shows up as kind of the way that we do analytics, the way that we develop equations. It's literally a variable that gets added in that you're saying we're now realizing this is not appropriate.

Amanda Okaka (05:14):
And I would say it even goes a step further beyond the analytics and the testing of some of these products where we see it in the design and also the teams and the people that are putting some of these products together.

Rae Woods (05:29):
Amanda, you just said that this is the current standard. Fanta, I'm curious for your opinion here. Does the industry realize that this is a problem? Why have we kept this system of care delivery around for so long?

Fanta Cherif (05:44):
Honestly, the best answer that I have here is that it's just easier to keep this at a very baseline level rather than looking at all of the interplay and just complexities of what race actually means. I also think we're getting to an era now where we're understanding a lot more about race and the interplay of other social factors, and we're really coming to the forefront as it relates to health equity, racism, and healthcare, etc. So we've sort of made progress very recently, but until then, it has been very just easy. And as we know, healthcare is just a slow-moving game. So rather than making significant change, it's almost just easier to just maintain the status quo that we've known for so long.

Rae Woods (06:28):
Amanda said that it's easy to get really pessimistic here. I think you're right to say that there is positive momentum and I have to believe that there are organizations that are at the forefront of actually trying to say, "How do we interrogate and investigate our standard practices that actually eliminate these race-based corrections moving towards something that is different, moving towards something that looks more like race-conscious care?" Paint a picture for our listeners. What does that mean and why is that the appropriate standard that we should be moving forward towards?

Fanta Cherif (06:58):
I think that means generally not just looking at race as something that is just a biological factor and something that is just a very one-dimensional parameter, but rather looking at it as more of just a risk factor, looking at the way that it interplays with other social determinants of health, just because we know that using that parameter as just a very one-dimensional thing is problematic because all of the problems and just differences as it relates to genetic history aren't really captured by a person's self-reported racial identity.

Rae Woods (07:27):
Absolutely, and where this makes me really nervous is because the standard thus far has been this category, this individual marker of your racial identity, is literally, as Amanda said, how we design the very clinical innovations that we use today. The innovations that frankly will define the future of specialty care, all things that are constructed through data, data that you're saying that is grounded in false assumptions, in racist assumptions, which ultimately would just make inequities worse and that's not what we want. I know I just said that there's an optimistic side and a pessimistic side, but can you talk to me about my nervousness here? Is it right for me to feel nervous about the future of clinical innovation given our history here?

Fanta Cherif (08:13):
I would say yes and no. I think when we think about precision medicine, there is opportunity so we shouldn't only solely be thinking of it as a large challenge. I think the rise in just precision medicine in general really can open the door when it comes to access to more products and different therapeutics simply just because with precision medicine it takes into account a lot of more parameters. It really takes into account just individual differences between different types of patients so that you're able to care for them holistically. But in order for that to be enabled, the challenge now comes with our data. As we know in healthcare, our data is not where we need it to be, and data is truly that pillar when it comes to enabling precision medicine. Without accurate data, without very expansive data, representative data, it's almost impossible to get that through the finish line.

Rae Woods (09:05):
I love that you responded to me with some specificity. I did the kind of high level of innovations in healthcare moving forward and, Fanta, it strikes me as interesting that you responded back with, "Let's focus in on precision medicine specifically." And it sounds to me like this might actually be a bright spot as we think about the future. Is that right?

Fanta Cherif (09:24):
For sure. I definitely think that we should be positioning precision medicine as an opportunity to really make sure that patients are getting the care that they need and the care that is right and tailored for them.

Rae Woods (09:33):
Okay, so let's focus the conversation on precision medicine. Amanda, what does that mean? I worry that that's become a bit of a buzzword in our healthcare market.

Amanda Okaka (09:43):
It definitely has. In this context, what we mean by precision medicine is all of these different factors as well as innovations that are coming together to really help us understand patients better. So when we think about genetic testing, pharmacogenomics, remote patient monitoring, and other digital therapeutics that can help us get a fuller picture of how patients are interacting with treatment and therapeutics outside of the traditional healthcare setting. And then we have those things like genetic testing, pharmacogenomics, et cetera, that are giving us a better idea of genetic variation between patients that goes beyond race and actually can help us to consider some of these structural factors that are contributing to a patient's health status. So it's not like it's one thing that's going to be a silver bullet. It is really what Fanta is talking about as viewing precision medicine as a culmination of all of these factors and really using it to design treatments that are specific to a patient.

Rae Woods (10:48):
Which actually brings me back to the very problem that we started with at the beginning of this conversation. We were talking about the fact that there are false and ultimately racist assumptions that we make about populations. If I think about the very goal of precision medicine, it's actually to look at an individual, their individual genetics, their individual social factors, and how that actually plays out in their care delivery. So it actually makes sense to me that if we think about advancing towards a more equitable future, precision medicine may actually be an opportunity to get to this ultra-specific individual care and rid ourselves of some of these assumptions that plague so much of the industry.

Amanda Okaka (11:33):
Absolutely. The more that we know, we're able to do better. And we've already started to make some progress here, race-based corrections have become scrutinized over the past five or six years or so. So we're seeing some momentum, but it takes time and effort to stop doing something when you have been doing it for so long and it is baked into the foundation of all of these things that we do. One example of this is eGFR, which is the test for kidney function, which is multiplied by 1.16 to 1.12 for Black patients based on the assumption that Black people across the board just have higher muscle mass and creatine than of other races.

(12:19):
So this actually overestimates their kidney function, so that can result in delays in dialysis, transplant referral, et cetera, and just overall not proper care for these patients. So we've seen changes. I think the National Kidney Association advocated that we stop using that in 2021. It wasn't until last year that the UNOS transplant list implemented the same change and said that they were going to stop using that correction and gave hospitals a year to their list, correct their patient lists and referrals. So we're only really going to start seeing the outcomes of that in this year. And like I said at the top of the conversation, there are race-based corrections that we see for so many other things.

(13:07):
And we haven't started to make progress in those areas as much. But I think overall, the more that the industry recognizes this as a problem and comes together to advocate for research and policies that help us better understand what other factors contribute to differences that we may see between racial categories, we're not really going to get ahead of this problem.

Rae Woods (13:32):
Does the market understand what you just said? It strikes me as very important that you walked through this example from naming the racist assumption that shows up, in this case, in the data, how that impacts patient outcomes, how that impacts patient's ability to access care, and the time it takes to then address and fix that problem. I am not sure that our listeners think about this when they think about something like health equity. What have your conversations in the market been like?

Amanda Okaka (14:02):
And I think you're right about that, Rae, because it is such a complex and sprawling problem, as we've said multiple times, it is baked into the foundation of so many things that it's hard for people to zoom out and see it as this overarching problem.

(14:18):
The market, although they are maybe focused on health equity, I don't think that they are understanding the scope of this issue because like I said, it affects a lot of other disease states. I just gave the kidney example, but there are other examples where we see this play out in terms of pulmonary function, obesity for Asian patients.

Rae Woods (14:42):
Well, it strikes me as something that's going to impact everything, right? I'm thinking about a conversation that I had with our colleague, Solomon Banjo, a couple of weeks ago where we explained to the market this term that we've coined of bespoke care, which is about more tailored care. It tends to be more expensive, it's certainly more durable, and the goal is better outcomes as we're describing here, and that being the new era of the way that we think about care delivery, period. And it's impossible to do bespoke care correctly if we are still using assumptions and corrections like this that are ultimately going to get in the way of more precise, more accurate care for patients. We'll be right back with more Radio Advisory after this short break.

(16:16):
You're listening to Radio Advisory. I'm Rae Woods. I want to talk about what the industry needs to do next. So there's this first part of recognizing the problem, which you two have done a very good job of painting that picture for me.

(16:30):
Now I want to talk about what to do next. I want to talk a little bit more about data and specifically about data collection. What needs to change there so that we get to something that is more representative and not reliant on these false assumptions, these false literal corrections in the data?

Fanta Cherif (16:48):
I think there's a ton. Just off the top of my head, I think the first thing is really increasing diversity throughout the entire product lifecycle. So as we talk about research participation, prioritizing diversity there, making sure that your efforts are really including more under-represented populations so that your genetic studies can be more diverse.

Rae Woods (17:09):
Yes.

Fanta Cherif (17:10):
I also think it means really fostering community engagement. This is something that I'm currently researching is how can life science organizations partner with provider organizations to really make sure that they are honing in on that patient voice? And that is a lot of the times going to require getting into the community and really fostering those very strong relationships. I think the third thing really is also just utilizing technology, but making sure that when you're utilizing this technology, that you're not just placing the technology on processes that are already biased. An example I can think of right now is VR, for example, virtual reality. We know that a lot of the times the argument for VR use is generally that we want to have more holistic care. We want to get away from the status quo of just prescribing opioids, for example. But we know that when clinicians are looking to see which patients are eligible for VR, pain indexes are going to be different. The perception of whether a Black veteran needs VR will be different than a White veteran, for example.

Rae Woods (18:10):
Yes.

Fanta Cherif (18:10):
So really making sure that if you're utilizing advanced technologies, one, making sure that the processes that you already have in place are free of bias or that at least you're at the table checking the biases. And then two, once you actually are able to make the investment, making sure that with that technology you can use it to manage and just analyze larger sets of data a lot more efficiently and that you're training your staff to really be attuned to what that technology can do.

Rae Woods (18:38):
It feels to me like one of the throughlines of this conversation is to not default to the way we've always done things, dare I even say the easy way that we have always done things. I worry sometimes when you talk about things like just doing the work to get more diversity into the research, into the clinical trial phase. I worry when we talk about engaging with the community in order to do that, that folks think that that is, dare I say, soft, fluffy even.

(19:07):
But that is actually quite hard to do when it's easier to just keep going back to the same groups. Frankly, the easily controllable group of, "This is a White population, this is a male population," for which we have designed all of our clinical products today. And it's going to take work to do the kind of things that you just described there, Fanta.

Fanta Cherif (19:31):
For sure. I think we can say that, for example, community engagement is something that is soft and fluffy, but we've also seen a ton of companies just pledge millions of dollars for community organizations, but never really get in the field, never really know what's going on with those-

Rae Woods (19:44):
100%.

Fanta Cherif (19:45):
... community organizations at all. Never really know what the basis of their patient populations are, the patients that are using and consumers that are using their products even. It's just a matter of doing the status quo, making things a lot more easy, and having that very public-facing action rather than really getting in and fostering those relationships. Really honing in on that collaboration and that partnership, aligning yourself as a strategic partner rather than someone who is just a transactional sort of supplier.

Rae Woods (20:14):
I appreciate you're having this conversation with life sciences leaders. What do you want to see providers do or even payers do to actually step in and create more sizable, more representative populations knowing that that process is more difficult than perhaps our listeners realize?

Fanta Cherif (20:29):
I think health plans have a lot of power in this conversation, and it's something that we overlook a lot of the times. Health plans have a lot of power as it relates to shaping coverage policies to really ensure equitable access to a lot of these products and services. Health plans are also able to see a ton of data and they have the money to invest in data analytics to identify those disparities and tailor their services to meet the needs for those diverse populations. And as it relates to providers, as we know, their direct interaction with patients also places them at the forefront of health equity.

(21:04):
So whether that means striving for cultural competence within your workforce so that the staff that you have interacting with these patients actually know and can better practice and understand the unique needs of their patient populations. It also means eliminating the bias within the processes that I just mentioned so that we can just make better treatment decisions so that patients all receive the same quality of care, which sounds baseline at this point, but we know that that is still not happening today. And then also just being able to engage in continuous education as it relates to their partners as well. It shouldn't just be, "One person does this thing, one person does that thing." It's really important that everyone has a role to play and that everyone can partner and collaborate together.

Rae Woods (21:46):
I appreciate the fact that we're talking about the upstream steps that need to be put in place in order to prevent negative outcomes in the long term. We've talked about this so far in the context of the kind of data collection analysis phase, but what you're starting to get at, Fanta, is something that Amanda brought up earlier, which is that we can go even further upstream and we can make sure that there is diversity in the very teams that are making these decisions so that we make sure that we identify challenges before we even get to the data collection phase. What do you want to see our listeners do there?

Amanda Okaka (22:20):
I think that this relates to what Fanta was saying about just having a better understanding of the people in your community. And when it comes to recruiting diverse teams, that can look like many things. So that can look like going to colleges, going to career fairs, going to HBCU career fairs, things of that nature, making sure that you're ingratiating yourself in that community and making sure that people are aware of your presence, first of all. Second of all, I think that it's really important because if we don't have diverse teams of people designing products, then we know that products are not going to work for a large swath of the population.

Rae Woods (23:04):
Can you give me an example of that?

Amanda Okaka (23:06):
So, one example that we see is with the pulse oximeter, which measures oxygen. So during COVID, we noticed that these devices were not working properly for Black patients. And it wasn't until a team of Black engineers got together to say, "Let's address this problem," that we were able to come up with a solution and develop a product that would actually work for patients of all races.

(23:32):
And we see other examples of this with other types of medical devices where we're just having this gap because we don't have people of diverse races designing the product. So that contributes to a gap in how they work. And then we also see that they're not being tested on diverse populations either.

Rae Woods (23:51):
Yes.

Amanda Okaka (23:52):
A lack of diversity in clinical trials has been a long-standing problem for the science and medical industries. Patients of color are less likely to be participants in clinical trials. They are more likely to be lost to follow-up during clinical trials so we're not really seeing the impact of these treatments on these populations. And I think a large part of that comes from a misunderstanding of, "What are the barriers to participation? How can we foster and instill trust in these communities?"

(24:22):
There's a long-standing history of medical mistrust in many minority communities. How are organizations getting ahead of that problem? How are they creating in-roots in communities, community-based organizations to show that they're invested in outcomes, to show that they're not just looking to recruit bodies and test on bodies, but actually to say, "Hey, we would like to understand how different factors are affecting how this population is impacted by treatments and products."

Rae Woods (24:54):
Because otherwise we're going to end up with a bunch of more examples like pulse oximeters that literally don't work in certain populations. And it still kills me that it took us getting into a global crisis about a respiratory disease for us to realize that that clinical product doesn't work on certain populations.

Amanda Okaka (25:14):
Yeah, exactly. So, I think that the industry as a whole really needs to rethink what are these barriers to access. How can we get ahead of them? And then also realizing that the data collection should not end with a clinical trial. You have to build standing relationships with communities and patients. Real-world data is something that is incredibly valuable to show how products are working outside of the sterilized controlled environment of a clinical trial so that we can have that long-term understanding of how these products and treatments are impacting the health status of different populations long term.

Rae Woods (25:58):
I can't stress enough how essential this conversation is and that we are naming the very challenges that happen across the innovation lifecycle. We have to name those challenges in order to start to address them like Amanda has shared in the examples with kidney disease and the examples with the pulse oximeter. Let's leave our listeners with an action item. What do you want to see from payers, providers, life sciences companies as we move from race-based to race-conscious care?

Amanda Okaka (26:29):
As we've said across the conversation, this sounds hard and it sounds pessimistic a little bit, but I think that industry leaders need to recognize the opportunity here. We have never had as much capability as we have now to deliver precision medicine, and that is really an opportunity that I think the industry can hold hands around and think about how to run at these challenges instead of just adapting to the status quo or doing what's easy or doing what they've always done. Because without addressing these very deep-seated difficult issues, we are only going to perpetuate them. And I think as innovation moves forward with these biases baked in, it will only exacerbate some of the issues that we're seeing today when it comes to health equity. My big piece of advice for the industry would be, stay positive and go after the problems because, like we said, this is really an opportunity.

Rae Woods (27:39):
Fanta, tell me more about the opportunity that our listeners have.

Fanta Cherif (27:42):
I think it's multi-pronged, but like Amanda said, this is hard. It deviates from our status quo. So my thing would just be not to succumb to decision paralysis. I think we don't have to solve for all marginalized communities all at once, but starting somewhere is better than not starting at all. Whether that means just stratifying your data to start with Black obese women, for example. It's an easier thing to swallow and run at. So what I'm trying to get at here is scaling down, stratifying your data, partnering together with other industry players on different pilots and starting with smaller groups is a good place to start.

(28:20):
Whether we want to position this as only a challenge is going to be the thing that keeps us at that decision paralysis. Precision medicine can actually enable us to not only have lower cost of care but also just higher quality of care and just increase access to care in general. So there's a ton of opportunity there. I think it's not even something that we can quantify now at this point, but just knowing where we are now, we know that the opportunity is immense.

Rae Woods (28:49):
Well, Amanda, Fanta, thank you so much for coming on Radio Advisory.

Fanta Cherif (28:54):
Thanks for having me.

Amanda Okaka (28:55):
My pleasure. Thanks for having us.

Rae Woods (29:01):
We covered a lot in this conversation, and I know you might be leaving this episode feeling a little bit down, but I actually want to focus on all of the positive things that Amanda and Fanta shared, not only how we can actually start to address some of the changes across the innovation lifecycle, but the opportunity that comes with precision medicine. The opportunity doesn't start and stop there. In fact, there is a lot we can do when it comes to ensuring that the future of specialty care is more equitable. This is going to be something that we talk about across every single session in this year's Clinical Innovation Summit. And frankly, it's something that we try to talk about when we talk about all of our Advisory Board research, because remember, as always, we're here to help.

(30:14):
New episodes drop every Tuesday. If you like Radio Advisory, please share it with your networks, subscribe wherever you get your podcasts, and leave a rating and a review. Radio Advisory is a production of Advisory Board. This episode was produced by me, Rae Woods, as well as Abby Burns, Kristin Myers, Chloe Bakst, and Atticus Raasch. The episode was edited by Katy Anderson with technical support provided by Dan Tayag, Chris Phelps, and Joe Shrum. Additional support was provided by Carson Sisk, Leanne Elston, and Erin Collins. We'll see you next week.