Building Trust Through Community Engagement in Cancer Care

At our recent Institute for Value-Based Medicine^® event held in partnership with Vanderbilt University Medical Center, Karen Winkfield, MD, PhD, led the discussion, “A Vision for Community Outreach and Engagement in Nashville and Beyond.” In part 2 of our interview with her, she speaks to the importance of ensuring health care accessibility and of knowing that the health care system is not a one-size-fits-all arrangement.

“Different people are going to have different access points to what is possible here in this country,” says Winkfield, who is the Ingram Professor of Cancer Research at Vanderbilt Ingram Cancer Center, professor of medicine at Meharry Medical College, and executive director of the Meharry-Vanderbilt Alliance.

Click here to revisit part 1 of our discussion with Winkfield.

This transcript has been edited for clarity.

Transcript

How can researchers and health care institutions ensure that their work is meaningful and accessible to all communities, particularly those that are traditionally underserved?

That fear of finding out is really difficult, especially for some communities, because they know they're the breadwinner or they know that their income is required to make their household run. So if you have a cancer diagnosis, that's going to interrupt life and might impact family and children, etc. And so this is why we have to be very sensitive to that and not make the assumption that our health care system is a one-size-fits-all—because it's not.

There are some communities that are so hyperdisenfranchised, on purpose, disenfranchised.And because of that, they actually struggle with even just access to care, which goes beyond an insurance card. It's all the other factors: what's happening in life, what's your socioeconomic status. All of those factors are important for us to keep in mind when we're actually trying to talk about cancer care along the continuum from prevention to survivorship—because different people are going to have different access points to what is possible here in this country.

Communities can mean different things, groups of individuals who have a common purpose. So for instance, there's a community of physicians, there is a community of lawyers, there's a community of nurses. But here oftentimes we're talking about populations [and] population health, whether it be individuals who come from rural communities or individuals who come from urban communities. Certainly race/ethnicity is an important piece. People who may or may not speak English here in the US as their primary language.

These are all factors to consider when we're actually dealing with communities. And so because every community has a reality in the United States, we have to learn how to meet people where they are. And people think that it requires a whole lot of effort and it doesn't. What I say to my colleagues, particularly physicians but also our researchers… for my physician colleagues, I [say that] somebody may be different from you, but this is just about building relationship and asking people what their needs are, asking people to share with you where they are so you can meet them there. The onus when it comes to a patient-physician relationship is really on the physician to establish trust with your patients. We do it all the time.It’s fascinating that there are some who struggle with somebody. Somebody comes in and doesn't speak English and they're struggling. It's still relationship building.

I would say, again, community engagement oftentimes gets a bad rep. People are like, “It’s time consuming”—but it's not. For my physician colleagues, even just kind of thinking about your daily practice and how you engage with people, having that culture, humility, the willingness to ask those questions, is really important.

Secondly, I think it's important to think about how we actually represent ourselves in the community. We can have such a huge impact, literally, even if we just did 1 talk a year around cancer screening or the advances that are being made. This is important to help educate our community, but also to engage them, and then we get to be seen as a trusted partner.

I do believe the same applies for research. At this meeting, we had some amazing scientists talk about their discoveries and the innovation and, oh my goodness, it's amazing. But we also know that again, there are some of those communities that just talked about that don't have access to those great techniques. So, what happens? We find a cure to cancer, but not everyone gets that cure?

It's important for our researchers to be able to articulate their research in a way that is meaningful to the community.

Why should taxpayer dollars—because the National Institutes of Health, it's funded by taxpayer dollars—why should taxpayer dollars go to fund your research? Why is your research exciting? And why should the community say, “Oh, I'm so glad that my tax dollars are going to pay for that,” or “I'm so glad that the institution that's sitting on the ground, that they get tax benefits and they don't have to pay taxes into my local economy. I'm so glad that we are supporting that institution because look at the incredible research that's being done that may not ultimately impact me, but may impact the next generation.”

So, I think that's important. Researchers must learn how to talk about their research in a way that the communities that we serve can really understand.