Q&A: Professor Keren Ladin discusses recently published study about organ donor designation

Keren Ladin, assistant professor in the Department of Occupational Therapy and Department of Public Health and Community Medicine, recently published a study in the "Milbank Quarterly," a health and public policy journal. Ladin, who has been researching organ donations since 2007,  finds that social capital -- which, according to the Harvard Kennedy School, refers to the "specific benefits that flow from the trust, reciprocity, information and cooperation associated with social networks [or who people know]" -- can account for over half of organ donation designations. This new insight shifts the focus from individual characteristics to community interaction as the basis for analyzing such altruistic decisions.

Last week, Ladin sat down with the Daily to talk about her research.

The following is an abridged version of the interview.

Tufts Daily (TD): What got you interested in this topic?

Karen Ladin (KL): I've been researching [organ] transplantation more broadly since 2007, and it started off because it merged my interests in disparities and ethics and healthcare resource allocation. Transplantation within the U.S. healthcare system -- thinking pre-Obamacare -- is a fairy unique example where, in kidney transplants at least, you have a fully insured and regulated market. So everyone who is transplant-eligible for a kidney in the [United States] is insured under Medicare, and the actual transplants and candidates are all recorded and public. So we have data on everything, which rarely happens. And yet, despite this sort of perfect market situation, we continuously have disparities. So even when we update the algorithm in terms of taking out criteria that we think are reinforcing inequities, disparities remain ... And it's interesting...in the context of the discussion of healthcare reform. You know, the notion was that "If we insure the entire population, if we give everyone health insurance, then we're going to really alleviate disparities." There is some element of that which is true; you will mitigate some level of disparities. But it is not the be-all-end-all.

So studying transplantation and disparities in transplantation gave us a way to think about that, about what other mechanisms might be at play. And because [living-donor transplantations, or organ donations,] is also a sensitive issue...it brings to bear [on] or incorporates other fields in which I have an interest: psychology, social psychology, sociology and health economics. So for me, it was sort of a perfect area.

In 2007, I was approached by the Chief of Transplant[ation] at Beth Israel Deaconess [Medical Center] to help start their disparities research or expand their disparities research, so that's really when I became interested in this. And this paper is somewhat an evolution of that, with a colleague Jim Rodrigue, who's still at Beth Israel, and had access through one of his grants to the Registry of Motor Vehicle[s] database. He was using that database to look at other things, but I became very interested in questions of social capital and whether or not that might affect organ donation or people's willingness to become organ donors.

TD: Do you know any [types] of activities that might be able to promote higher social capital?

KL: It's an area where a lot of people are doing important work. Raising social capital is difficult. It requires you to raise trust between people who may or may not encounter each other in a confined community. But there are ways of doing that. So promoting collaborative projects, for example through participation in shared religious interest or in [Parent Teacher Organizations] or in neighborhood watch or, some might argue, even the Black Lives Matter type of movements. Giving people agency, having them work together toward a shared or common goal, [is a way] of encouraging social capital. Part of what we found is that areas where racial segregation is higher have lower social capital and lower rates of donation, or of organ donor designation. Again, [we see] this notion that some of the things we need to do to solve the major social problems of our time have real implications for our health. And this is one way that it becomes evident, should...any of us need an organ. Improving social capital and ties between people is likely to have a better effect.

TD: Do you also feel that by increasing social capital, the effect might spill over into other altruistic behavior, like voting?

KL: Yes, one reason we looked at social capital and organ donation in general is that there are established theories of altruistic behavior that suggest that, when people feel more strongly tied to a group, their likelihood to deviate from that or not participate is going to be much lower. If you feel engaged, if you see yourself as part of the group, you are likely to do things that benefit the groups, and you are less likely to deviate. We follow in the footsteps of the literature about voting and about other sorts of altruistic behavior and public participation.

It's an interesting question to think, "If you affect organ donation, are you going to affect voting?" I would assume it would be more the other way around. If people feel like they can be engaged, then they can be engaged in all levels and all areas of their lives. Part of the literature of looking at barriers to organ donation has to deal with distrust: medical distrust, distrust of government, community distrust. This [is the] notion of it’s not going to go to me, [that] it’s going to go to someone different. And if I need it, it won't be there for me, so there's no reason for me to participate. Or other studies have looked and documented that people feel a sense that doctors won't try as hard to save them if they are an organ donor. All [of this] kind of [suggests] to us that there is something systemic going on and something that we can affect by moving the needle on social capital.

TD: So alongside working to increase social capital, do you think there should be an increase of awareness against those misconceptions?

KL: I think so. I think more qualitative work needs to be done to understand exactly the variation in barriers. So I think they might be different even if you look in communities or zip codes of high versus low social capital. More work needs to be done to understand the shades of gray -- what are the perceptions out there in various communities that have lower social capital versus middle versus higher social capital? And then [there is] the question about whether doctors should advocate [for donating organs]. I think they should, but I think part of medical distrust is that they may not be the most trusted people. And so partnering with communities may be the best way to do this. So looking in your community at people who need an organ and having them advocate, or people who have donated and having them advocate, may be more effective in encouraging donation and also dispelling myths than hearing it from someone who's...in a different position.

I think practically, when we think about individual behavior, expanding our scope of inquiry and focus to looking at communities as the level of intervention is central to many things in public health. But it's central to social policy as well, and I think that's what our findings demonstrate -- that we ought not to focus on individuals or even try to identify subgroups based on their only individual-level characteristics. We should focus on communities and what communities are like and then try to work within that framework.