Today I get to talk with Lakshmi Grama, former Associate Director for Dissemination and Digital Communications at the National Cancer Institute. She shares stories of early days at NCI, bringing everyone to the table, and power dynamics in health information.
Communication about clinical trials is a very specialized part of health communication, but stories from clinical trials communication can hold lessons for the rest of us. So today, I get to chat with Lakshmi Grama, the former Associate Director for Dissemination and Digital Communications at the National Cancer Institute. Lakshmi talks about power dynamics in important conversations, and shares stories of how users of Cancer.gov change the way NCI talks about clinical trials.
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Today’s guest is no stranger to the complexities of health information and digital strategy. I’m joined by Lakshmi Grama, the former Associate Director for Dissemination and Digital Communications at the National Cancer Institute — and the person who oversaw Cancer.gov. In this conversation, Lakshmi takes us back to early days of clinical trials communication and of the internet. We dive into power dynamics, her collaborative approach to communication at NCI, and how users of Cancer.gov actually helped redesign how NCI communicates about clinical trials. Let’s dig in!
Anne Marie: I’m live via Zoom with Lakshmi Grama. Lakshmi is the former Associate Director for Dissemination and Digital Communications at National Cancer Institute. She was almost 25 years in federal service and 10 years health communication before that. A lot of Her work was in cancer, but she also worked in maternal child health, child abuse and neglect. And clinical trials communication was a focus of hers for a long time. Lakshmi oversaw Cancer.gov. And previously, she led the work on NCI’s PDQ Cancer Information. So, Lakshmi, welcome to the show.
Lakshmi: Thank you, Anne Marie. It’s just wonderful to be here.
AM: I’m delighted to have you here. I’ve really been looking forward to talking to you. Because there is so much you can talk to us about! So what is a problem or issue in patient communication you have faced?
LG: So one of the issues, or topics, I shouldn’t say issue, I should say topic, is around clinical trial communication, especially with helping people who have received a diagnosis of cancer, think about clinical trials in the context of their treatment options. And it also sort of intersects with another area that I am interested in, which is power dynamics in important conversations. And in information dissemination, as well as in information seeking, and helping people educate themselves about a topic. There’s always that power dynamic between someone who doesn’t know very much and someone who is the expert. So I thought perhaps we could talk about that today.
I would love to, I would love to. And listeners know how many times we talk about language and power on this show. So I’m delighted that you brought that up and especially language and power in the context of clinical trials communications, which are incredibly high-stakes communications for patients. So how did you face this kind of topic, the overlapping topics of power and clinical trials communication?
– So, you know, this has been a topic that I’ve been interested in for a very long time. In fact, very early on, even before I became a Fed and started working for NCI, I was working as a contractor for NCI. And my first introduction to clinical trials conversations was at a big stakeholder meeting. Back in 1998, I’m gonna date myself! But it was a meeting that brought together advocates, experts as well, trialists, health professionals, and it was very interesting. Those were the early days of patient advocacy in cancer. And patient advocates were very particular that they needed access to all the information that there was, that they could get their hands on. Whereas health professionals were hesitant. They were a little concerned about the nuance in the information. They were concerned about how do people, would people be able to understand. And these were early days of the internet as well, in that this would be suddenly available to the public. So that kind of is where I sort of got this ringside view, almost, of this conversation. And that has stayed with me, and I’ve seen it evolve over the years quite a bit.
– I mean, wow, what a remarkable story. And I loved that, “ring side seat” metaphor because you really did. So what part of that, staying with you, that the patients asking for more information and the providers being concerned about, “oof, some of this is going to be really in the weeds, some of it’s going to be potentially difficult to parse out.” And then the upcoming of the internet where this information is all gonna be made public, and people trying to wrap their heads around what’s a complicated diagnosis. What are you, how did that kind of a ringside seat shape your approach to what would become cancer.gov?
– So one of the key things there was, being able to talk not just to stakeholders. We were talking to a lot of our stakeholders. And traditionally health communication, one of the first things you do is convene your stakeholders and understand from them what the needs are, and how you can meet those needs. But one of the things that happened, given the internet at that time, was that there was this development of a new field of work, research, it was more–it was not even called a field of research at that time. What we now know as user research
Mmmm
Or user experience research, and it was really around bringing people who might use your products and your services, your information, and just watching them use it. And having them talk through what some of their challenges were. And how they were going to–the questions that they had, the kind of problems they were getting into. So it was bringing that aspect of research, combining it with what we were hearing from the stakeholders. Sometimes those two things came together well, and sometimes they didn’t. So it was still very interesting to explore these questions. And we did have at NCI, I have to say we were really fortunate to have that kind of environment where we could conduct the research with our users, and also bring in insights from our stakeholders, and try to iterate upon the products that we were developing. We could never, you know, people asked, “Oh, you’re redesigning again?” But the question always was, it’s not that we’re redesigning again. It’s the way people use information, the way their expectations from the information resources, all that changes. And the context is different each time. And the technology is different. So we were using all these as inputs into iterating to develop better and better approaches.
– I mean, and just so delicious, just so delicious. I wish I could have had a ringside seat for that too. Just these sets of processes, this iterative approach, the engagement of all of the different groups, and the fact that you were constantly reinventing, and constantly following people and letting people lead. Just so much here to appreciate. And I want to ask, what are a couple things that you learned from this process, from facing this particular situation in this very participatory way, this very iterative way, this very collective way? What are a couple–I mean, I’m sure you have 35 years of learnings, so really anything that you want to say is going to be great for us to hear!
Yeah, I think some of it was in the context of building a tool to find clinical trials that was one context. So people would be able to, on their own, at least identify a set of trials that they could take to their oncologist and have a conversation about.
Hmm
To even ask, “is this something that would be right for me?” Because one of the things we learned from research was that oncologists don’t always bring up clinical trials in the conversation. And probably it happens a little bit more now than it did, say, in the early 2000s or the early teens. But it’s really to help that conversation. That was our goal. And in order to have that conversation, people need to be able to understand what clinical trials are. Educate themselves about it, and also then have–bring questions, bring these trials themselves to see, “is this something that would be right for me?” So there was that one aspect and another aspect was around, how do we frame clinical trials for people? There was so much fear around it. The fear of being, “I used to think I’d be a guinea pig.” And so, how do you present it as something that you should educate yourself about, consider it, and the value it might or might not bring to you as an individual, but definitely its role in developing new treatments.
Thanks again to Lakshmi Grama, and tune in next time for Part two of our conversation. Lakshmi and I talk some more about clinical trials communication, about Cancer Moonshot, and about how trying to answer one simple question led to big change. If these themes resonate with your work and you’re exploring how to build trust and design meaningful health communication, let’s connect. I’m always interested in partnering with organizations ready to elevate their strategies.