Prioritizing Equity Spotlight series: Centering restorative justice in health innovation

This Prioritizing Equity Spotlight session is sponsored by the Robert Wood Johnson Foundation and the American Medical Association Foundation.

Over the past several years, there has been an increased awareness of the exclusionary policies and practices that have restricted and impacted the health innovation ecosystem for communities that have been historically marginalized and minoritized. These historical truths warrant restorative remedies to heal and reconcile past and current harms.

This session will explore restorative justice in the context of the health care innovation space and related policies, practices, politics and strategic opportunities to center healing and humanity in health care design and technology.

• Jamila Michener, PhD—author and associate professor at Cornell University; co-director of Cornell Center for Health Equity
• Ruha Benjamin, PhD—founding director, Ida B. Wells Just Data Lab; professor, African American studies, Princeton University

• Mia Keeys—director, federal affairs, Hologic

Keeys: All right. Good afternoon, everybody. Welcome. Well, welcome to us to the stage. I’m Mia Keeys and I’m so very glad to be joined today by all of you here. We’re going to be talking about centering restorative justice within health innovation and I’m really quite honored to be joined by you all who are policymakers, whether you’re tech innovators or C-suite level executives. All of you have quite the role with respect to standing up for restorative justice in your own practices and within your own communities.

During this session, as I’ve mentioned, we’re uplifting restorative justice, and what we mean by that in the context of health care innovation and policymaking and practice refers to the collaborative approach that brings together those key constituents who have historically been marginalized or minoritized or just not a part of decision-making processes, bringing all of those persons together to bear on the decisions made around practices, policies that have historically been a part of different organizations and have been perpetuated by offending parties.

Now that definition was adapted from the American Association of Medical Colleges, also by the Restorative Justice Network, the UN Human Rights Commission and finally from the American Medical Association’s organizational strategic plan for embedding equity and advancing racial justice and health equity. I’m really especially proud of that. I was a part of that mission when I was with AMA not too long ago, but today, we are really very excited to be joined by Dr. Jamila Michener.

She serves as the associate professor in the department of government at Cornell University, where she’s also the co-director of the Cornell Center for Health Equity. She’s known as the poverty scholar, right? Yes. I love that about you and your research. Dr. Michener’s research focuses on poverty, racial inequality and public policy here in the United States. Her recent book, “Fragmented Democracy: Medicaid, Federalism and Unequal Politics,” examines how Medicaid in particular affects democratic scholarship and democratic citizenship. Dr. Michener, thank you so much for joining us.

Dr. Michener: Thank you for having me. Hi, everyone.

Keeys: We also have with us on the screen—I can’t see her here—someone who I say is probably one of our most compelling voices and eloquent champions of all things related to justice, of really this century, Dr. Ruha Benjamin. Dr. Benjamin is the author of “Race After Technology,” and I’d be remiss if I didn’t show you my dog-eared copy, right? You probably have the same thing on your shelf, right?

Dr. Michener: I love it, yep.

Keeys: Exactly. And she also has a forthcoming book, which I have to make sure to get. It’s called “Viral Justice: How we Grow the World We Want.” She is a professor of African American studies at Princeton University, where she studies the social dimensions of science, medicine, technology, with a focus on the relationship between innovation and inequity, knowledge and power, race and citizenship, and health and justice. She’s also a yogi and a recent beekeeper if I’m not mistaken.

Yeah. Thank you so very much, Dr. Benjamin, for joining us today and we really appreciate both of you being here. I’m going to go ahead and jump right into our questions. The first one is for you, Dr. Benjamin. The primary focus of your work is the relationship, as I mentioned before, between innovation and equity, particularly focusing on intersection of race, justice, and technology. Can you speak to the damage that’s caused by structural racism in particular and especially the role of exclusionary practices within the field of innovation? Then I’m also wondering how do you feel in terms of hope for restoration?

Dr. Benjamin: Thank you for that question. I’m thrilled to be with you all virtually and so that’s a heavy question. I call that a dissertation-worthy question because we could talk about it for hours but I’m going to limit my reflections to a couple of minutes. I think for starters, we have to understand that innovation doesn’t necessarily lead to something that is good or desirable. As a starting point for this conversation, we have to disentangle what we think of as technological prowess from social progress, one that doesn’t necessarily lead to the other. We can think of many examples. I’ll just put a few on the table.

The first person who put up a “Whites Only” sign on their business was being innovative. They were doing something new to get to a certain end. Well, think specifically in terms of historical context. J. Marion Sims, who’s sometimes referred to as the father of gynecology, who honed medical techniques by experimenting on enslaved Black women, he was being innovative. Likewise, something like the electric chair, at the time that it was developed, was considered a technological marvel, a more humane way of killing people but we have to ask ourselves, who was that making feel better, that more humane way of killing? Certainly not the person who was on the other end of that innovation.

As a starting point for this conversation, I want to encourage us not to conflate technological prowess with social progress. We should assume that any new invention is going to include social inequities unless and until proven otherwise. That is it is on the onus of those who are creating these new technologies to show us that they are not going to reinforce social inequity and injustice. We can’t just go according to the marketing hype because there are all kind of buzzwords that create a shiny veneer of new technologies that hide the actual impact of these.

I’ll just name two quick ones in the context of this pandemic and health technologies. Research has shown that the pulse ox that measures oxygen saturation level and many people have used it at home in order to decide when to rush to the hospital. It doesn’t work as well on people with darker skin tones. Likewise, there are health care decision algorithms that are currently impacting millions of patients in this country that have shown to have a bias against Black patients even though the algorithms are seemingly color blind. The key here is to understand that glossy exteriors routinely hide dangerous interiors. They don’t have to. It’s not inevitable but it’s predictable.

To this last part of your question, any hope for restoration, yes. But this hope isn’t going to come in the form of glossy PR announcements and flashy, eventful initiatives that gather a lot of attention and credit for those who are finally doing something about these issues. Any way forward is not going to be for people but with people who are impacted by harmful systems. It’s not going to be top-down but community-driven forms of redress. And also it’s not going to make us feel warm and fuzzy if it’s really reckoning with the forms of injustice, the complicity.

Here I’m thinking specifically about medical injustice but we can talk about economic injustice. We can talk about housing injustice, so it’s not going to feel warm and fuzzy. If it is, then we’re probably not doing it right. Finally, I want to say that the harms that are created, that we’re talking about, they’re created because of business as usual. That means that repair has to happen in everyday practices, in the nitty gritty, in the fine print, in the design of products, and so that’s where we should focus our attention rather than on these big flashy forms of restitution that often are just rhetorical rather than substantive.

Keeys: Thank you so very much with that, Dr. Benjamin. I want to just hearken back to some of your words you said. Tech prowess is not equivalent of social progress and innovation is not always for the social good, and then finally you said reckoning is not warm and fuzzy. I’m surmising but I think that that really brings us, segues very well into something I’d like to talk with you about, Dr. Michener. You know, in your research and your writings you describe the application of a racial equity and policy framework. You call it the REAP framework, right? In terms of health policy being innovation, what does that form of innovation offer in terms of advancing restorative justice or that reckoning as Dr. Benjamin mentioned, particularly when it comes to those lasting harms related to unequal health care?

Dr. Michener: Yeah. Thank you for the great question and it’s always unfortunate to go after Dr. Benjamin.

Keeys: No, no.

Dr. Michener: Because so much of the kind of core of the framework that I developed that you mentioned is actually reflected in those comments. Two core aspects of that that I’ll point out, in particular, that will help me to sort of get to your question around health policy and what health policy has to offer around innovation and restoration, restorative justice. Two core aspects of that framework are as follows. One is that if we want to identify the kind of sources of things like structural racism, these injustices that embed in fundamental ways inequities in our society and in our practices, if we want to be able to identify those so that we can rectify them, we have to attend to the kind of nitty-gritty of process.

Process is more important in many ways than outcome. When it comes to racial disparities, for example, we tend to focus pretty heavily on outcomes. In fact, that’s what disparities are. They’re an outcome, and of course, there’s good reason. Outcomes can flag problems for us but those problems are fundamentally in the process, so part of what I do in the framework is say what parts of the policy process do we need to attend to and where in those various parts of the policy process do opportunities for injustice, for structural racism to be perpetuated, where do those opportunities emerge?

There’s a lot there, so I won’t say anymore except to say process is crucial and attentiveness to it is crucial. The second part—and this is part and parcel of the first—that’s a core aspect of the framework is to say that voice is crucial. In other words, for the folks who have power, who are making decisions, who are making policy at a national level, at a state level, at a local level, sometimes even at the level of specific institutions, businesses—for example, if those folks who have the decision making power and who often have other kinds of power and resources, economic power and so on and so forth, are the primary voices driving policies, those policies will inevitably disadvantage the folks who don’t have power.

Whether intentional or not. Good intentions don’t actually circumvent that core problem. We have to pay attention to process and a fundamental element that we have to build into process is voice. When it comes to health policy we see this in so many ways. I have a big study that I’m doing right now, a cross-state study, and we’re talking to people who have struggled with health problems throughout the pandemic and getting a sense of the kind of nitty-gritty of their experiences and trying to understand what it looks like to create changes in those people’s lives on a structural level.

We’re working with and advising state and local governments around how they can make policy change to improve the lives of especially people who are at the economic and racial margins. What we’re finding is that many of the kinds of innovations that we can get most excited about are experienced really differently in people’s everyday lives. We talk to people about things like telehealth, which in many ways can be a great option for folks who have challenges around mobility or disability, for folks who have other kinds of challenges that make it hard for them to get traditional health care but for many other people and even for some of those folks, telehealth as it’s actually implemented becomes a potential purveyor of bias and discrimination.

There are lots of examples of that, of things like that. For example, government agencies are constantly adapting new systems. They have these systems for managing their files and managing their clients, and managing their cases—and they get pitches from whichever businesses are designing those systems and want to sell them to a government contract, want a government contract that can be very lucrative for them. They get these pitches, and they implement these systems and often have no idea what the consequences are for the people who are relying on the functioning of those systems in order for them to get vital resources for daily lives. Without robust incorporation of the voices and perspectives of those people, without, in fact, them having some power over the processes of innovation, the outcomes will inevitably lead to inequity. That’s a lot of the kind of thing that the framework highlights.

Keeys: In your framework it’s voice, right? It’s voice, it’s decentralization and you have to look up her framework, for sure.

Dr. Michener: It’s a lot. I was sparing you all of the boring details and trying to draw out the highlights.

Keeys: My takeaway from your framework is that it’s not as if legislators or persons in decision power can say we legislate that all people treat their neighbor with kindness and respect. That’s not what you’re going to see in a law, right? That gets back at the whole idea of good intentions don’t necessarily always come through in the process. We’re talking here about the process, and the process is not just something that happens in the middle. Restorative justice and bringing in those voices doesn’t just happen as a checkpoint. It’s continuously across the continuum of the process you referred to.

Dr. Benjamin, I want to bring you back in this conversation here. In your works, you’ve contributed a lot to a body of work that debates how science and technology shape the social world, in general, and how people can and should and do critically engage techno-science, grappling all the while with the fact that we might bring health and longevity to some, as in those innovative technologies might bring health and longevity to some—and to Dr. Michener’s point—really very much leave others by the wayside. Can you speak to those shifts or changes that would likely occur if restorative justice were front and center or even mandatory for leaders and decision-makers within innovation?

Dr. Benjamin: Yeah, I want to talk about this not so much in generalities but I want to offer a very concrete example of this in action that people can study, learn from, adapt to their own context. Very recently two physician researchers at Brigham and Women’s Hospital in Boston, they analyzed 10 years of hospital data at Brigham and Women’s, specifically among cardiology patients. They found significant disparities in how Black and Latinx patients on the one hand and their white counterparts on the other were being treated when they came to the hospital with heart failure. Black and Latinx patients were sent to general medicine service while white patients were referred to the specialty cardiology service where patients have much better outcomes.

They analyzed this data and then they created what they call the Healing ARC—A-R-C—and ARC stands for acknowledge, redress and closure. This team, what they did was they presented this data to the priority neighborhoods around Brigham and Women’s, those in which these patients were coming from and they’re developing a community oversight initiative specifically around this issue. One of the concrete innovations that their team created was in the electronic medical record—now you have a flag so that when a provider is looking at a patient’s chart, for a Black and Latinx heart failure patient, it flags the provider to refer them to cardiology rather than leaving it to the discretion of the provider or relying on patient’s self-advocacy.

The lesson here that Morse and Wispelwey, who are the two physicians leading this research, the lesson here is that not only do they call for society-wide restitution, kind of federal level laws and policies but they are encouraging every single institution and organization to look at the history of racism and inequity in their own locale. What’s happening under our own roofs? What forms of disparities are being produced because of business as usual? It doesn’t rely on the malice or the hate in someone’s heart but it’s a combination of a lot of factors that they identified that was leading to these disparities.

What they encourage us to do is to engage in local anti-racist efforts, and in this case, it’s a combination of what we might call social innovation that is letting communities lead the process, including them in the research, having their oversight. Remember, community-driven, not top-down, but it also includes a technological component. That is including this flagging function in the electronic medical record that forces providers to reckon with their own bias, not letting them sort of rest on their own assumptions. The last resource I’ll just put on the table in addition to Professor Michener’s important framework is something everyone can look up called “Beyond the Statement,” by Color of Change.

Statement there is referring to all of those anti-racist statements that have come out in the last two years in which corporations and organizations and universities lay claim to a certain set of values and commitments. “Beyond the Statement” is getting us to think about concrete actions, taking those statements and actually directing them into the business as usual. Two things stand out when you look up the Beyond the Statement recommendations. One is incorporating racial equity audits.

That is evaluating the products, the policies, the data that we are producing for discrimination and the other thing, there’s a number of recommendations but the other thing I’m just going to highlight for sake of time is that we have to create civil rights-oriented accountability systems that are tied to performance evaluations for employees. That is, what we’re talking about here can’t be extra icing, only those who self-select into DEI work. It has to be tied to performance evaluations and it has to be civil rights oriented. I would encourage everyone to download and study “Beyond the Statement by Color of Change,” to really think about how they can implement those recommendations in their own businesses and organizations.

Keeys: I think we had a couple of snaps in the audience with everything you all are saying. We’re coming close to time but I just want to give you one last question here, Dr. Michener. With all that you both have identified, what are your overall thoughts in designing practices and policies for monitoring, for building access, for building in accountability at the civil rights level, at the local level with respect to your work?

Dr. Michener: Yeah. You know, again, Dr. Benjamin offered some really, I think, important concrete illustrations and a great resource that she pointed to. I mean, given time to wrap us up, I would emphasize two things and the first, I think, is I always want to say this to people. There are no easy answers and so this is a long game. It’s not a game but it’s a long process and I can’t tell you how many students—I teach lots of students at Cornell—and we will look at policies that were intended to be, whether they were using the language at the time, anti-racist, that were implemented in the 1990s or the early 2000s or the 1960s. We’ve been trying to do this for so long. Maybe these problems are intractable. Maybe these people, maybe there’s something wrong with them and not the systems because we’ve been trying. We’ve been doing all of these things.

Certainly, in the wake of George Floyd’s murder, there were a whole flurry of policies that were implemented or practices that were implemented, statements that were made across all levels of government, in the business world and beyond, and some of these things are going to come to fruition and perhaps there will be progress clear. Some of them we won’t know because no one’s measuring or evaluating them, so that’s one concrete point. We have to pay attention to the outcomes connected to what it is, the changes that we’re making. But some of them are going to fall flat.

They’re just not going to work and the temptation is to say, “Well, we tried.” But the problems are entrenched enough that the focus has to be on long-term solutions and long-term mapping out the processes that work, holding onto the things that show promise, letting go of the things that don’t, learning lessons along the way. I want to emphasize that this isn’t like, “I’m going to think of the cool next DEI thing that’s going to fix everything.” Just like policy, processes don’t unfold like that in government. They don’t unfold like that anywhere, so the question is how are we going to deal with mistakes? How are we going to understand what success looks like?

I would emphasize that the voice component is crucial in both of them. Dealing with mistakes, in fact, is a question about restoration and restorative justice. Wow, we didn’t mean to do this. We haven’t meant to do this but we keep finding ways that we’re perpetuating inequities. We can try to ignore it. We can sweep it under the rug. We can deny it. We can point out the things we’re doing right so that we can draw attention away from the harms or we can actually focus on restoration and change, and we can get there and can identify and rectify the harms only if we pay attention to the folks who have the most at stake and we ensure that they have power in the processes that are unfolding. The last thing that I would say is that none of this is comfortable. Part of what I always tell people is that power isn’t a zero-sum thing. It’s not exactly as if the more power I have, the less Mia has but power dynamics do change environments.

If the people who are most affected by things like structural racism, folks at the economic and racial margins, have more power and if we build our practices and our processes to ensure that, it means that the folks who have power now who are comfortable, who are at the top, who are getting to determine what innovation looks like and what the important outcomes are and what success is—those people will have to now share power with others who before didn’t have it. Maybe that’s some of you, many of you in this room. It’s uncomfortable and so recognizing that change that leads us towards restorative justice, social justice, however it is that you frame what the goal is with respect to justice, is uncomfortable and often means sacrifice, and doesn’t feel good. I think that’s a really important aspect of the commitment.

Keeys: The process of restorative justice. That’s it. That’s it. Thank you. Dr. Jamila Michener, thank you so very much for your work. Dr. Ruha Benjamin, on a personal level, I studied both of your works for my own dissertation and then also I’ll say just by serendipity—Dr. Ruha Benjamin is a good friend of my late sister and I think if she were here in the flesh, she would be so very proud. So, thank you so much for your attention. Please make sure that you read these ladies’ works and apply, apply, apply restorative justice in your own processes through your strategies and thank you so much for your attention.

Disclaimer: The viewpoints expressed in this video are those of the participants and/or do not necessarily reflect the views and policies of the AMA.