In Part 2 of my interview with Lakshmi Grama, we find out what happened when the NCI team involved people affected by cancer in naming a new part of the cancer.gov website. Lakshmi also reveals how NCI was already exploring the possibilities of generative AI for precision communication about cancer. Missed Part 1 of our chat? Here it is.

In part two of my conversation with Lakshmi Grama, we continue to talk about clinical trials communication and the Cancer.gov website. And we find out what happened when the NCI team asked a seemingly simple question, “What should we call this?”

Hi everybody, this is 10 Minutes to Better Patient Communication from Health Communication Partners. Since 2017, we’ve been giving you inspiration and strategies to improve engagement experience and satisfaction. I’m Dr. Anne Marie Liebel, a researcher, consultant, and educator specializing in communication and education. This podcast takes into what we often take for granted about communication in our professional lives, especially in healthcare and public health and increasingly across sectors because communication touches everything. If you want to strengthen the impact you have in your professional sphere, this is the place for you. We’re here to learn, get inspired, and most importantly, make the difference we got into this work to make. If you’re looking for ways to deepen the impact of your communication at work, I’d love to connect. Visit healthcommunicationpartners .com and hit contact. Subscribe to our newsletter. Stay inspired. Reach out to me anytime on LinkedIn to explore how we can work together.

So hey everybody, hey! We’re continuing to pick up new listeners, and this is really remarkable. I’m just blown away. Lakshmi Grama, the first part of her interview continued this trend. We’re still ranking them a top 5 % worldwide of all podcasts on all subjects And check out the buzzsprout stats. I’ve got them linked in the show notes and it’s just kind of wild for me to think about this super, super niche show ranking up there with, you know, like big entertainment names and what not. And believe me, ask any one of my former students and they will tell you that it’s better for all

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Now you’re listening to the show so you know that communication is about so much more than just passing around information like it was pockets snacks. My late professor Brian Street taught us among other things that the act of naming something is an act of power. And in this episode, we get to hear what happens when that kind of power is shared. This is the second half of my conversation with Lakshmi Grama, the former Associate Director for Dissemination and Digital Communications at the National Cancer Institute, and Lakshmi was also the person who

Lakshmi Grama: The Cancer Moonshot actually provided some funding for direct patient engagement. And one of the projects that came out of that, with participation of people across NCI, was to build a part of Cancer.gov that would help us inform, educate, and motivate people to participate in clinical trials. And that was sort of one project that we recently did. And some of the learnings that I’ve been pondering have come from that project.

Anne Marie: Hmm

LG: So in that project, a lot of different things, we talk to advocates, the same thing, talk to patients. But one of the things that we struggled with is what do we call it? You know, what would we call this area of content for, around clinical trials? And one of the key drivers of this whole effort was that direct patient engagement. And what that means is patients are partners in the clinical trials enterprise, in the clinical trials endeavor. So we started out by actually calling it partners in cancer research. And that was very interesting. You know, we all felt like this is what we all believe in. And advocates believe in. That they are partners with us, and it’s not just the experts doing trials and bringing patients into the trials.

AM: Yeah

LG: So that really was very, we felt like we had built a good product. We had done a lot of our research and developed the right kind of content. And then as we usually do, we brought people back in to actually give us some feedback on what we had built.

AM: Hmm

LG: And interestingly, most of the people who we brought back, these were people who haven’t actually seen this before. So they came in brand new.  And they couldn’t quite connect with partners in cancer research. Because they said, This may not be the place I would come to if I were looking for clinical trials information. I mean, clinical trials are the way people can partner with us and research. So we thought we had on the right thing. But then, as we talked to them more, and understood that they are actually thinking of it primarily is: how do I join a clinical trial? How do I participate in a clinical trial? Those are their questions. Their questions are all from the perspective of, you know, how do I get into a clinical trial? What are the risks? What are the benefits? You know, is this something I should do?

– Yeah.

– So all questions we wanted to answer and we were answering through our content. But people didn’t quite get the context and the framing. So we went back, and it was very interesting. We’re hearing this. And even as we’re watching people, do this, go through the website and research, a few colleagues and I were talking about, what do you think we should call it? And as we started thinking, participate came to our minds. So then we immediately tried participate in cancer research, and asked people, what do you think? Do you think “participate in cancer research” would be a good way? And we got some good feedback on that. And so we went back and changed the name of that section to participate in cancer research. So it’s interesting, if I have to tie it back to the power dynamic question. It is just that, there, we were trying to make it as if we, they were all equal partners in cancer research. But then it’s not even so much that people who came there didn’t think of it from that that perspective. They wanted to find out, how do I do this? It’s fairly simple. We needed a name and it seemed like participate brought them into the process more directly than something like partner.

I love that story. And when you tell it now, it makes so much sense. And I like you literally had me on the edge of my seat when you’re starting it because I was like, oh, I hear a buutt…' coming! And that’s, that’s the, okay, it’s not, what we thought, we were doing a good job here. It’s that even after all of this work and with all of these experts, we can still, oh, right! We don’t have to get it right all the time. We need to listen to people and help them with the thing that they are trying to do, in the way that’s relevant to them. So what do you think, what do you see as coming next in our field? What possibilities do you see?

I think one of the things, thinking about power dynamics again, and what we’re seeing in technology and the changes that are coming, how we can address some of that. People come to information-seeking with varying levels of knowledge, context, interest, engagement. And what I see or what I’m excited by is the possibility that some of the generative AI related approaches that we are seeing might help us really provide that kind of tailored personalized content that currently we’re not able to, or we were not able to. And this is something that we had started thinking about and working on in terms of, what are the questions people come with? How do we write our content in ways that answer those questions? But that’s one thing. But then: how do we have content that then these generative AI engines potentially could take, and be able to present the answers to the questions that people have. That’s really very exciting. I wish I was still in the field doing this work, but hopefully I will, maybe not necessarily at the NCI, but hopefully there’ll be other opportunities to do things like this.

– And I mean, and that’s just absolutely fascinating. Like that’s next-level thinking. We’re not only thinking about how can we write this content in such a way that it answers people’s questions and meets them where they’re at. Now we have to think about how can we also make sure this is optimized

Mmhmm

So that the bots can scrape it and maintain the integrity, because of the way that people are doing search now. And just the real possibilities of the generative AI for, as you’re saying, precision communication about cancer with reliable information, with vetted information. Lakshmi Grama, thank  you for coming to this show. Thank you for speaking with us today. And thanks for taking some of the worry out of AI for me really personally. Thank you.

Thank you, Anne Marie. I really enjoyed talking with you. It's really been a great conversation.

Thanks again to Lakshmi Grama, and please check out the part of the Cancer.gov website that Lakshmi was talking about. I’ve got it linked in the show notes. Transcripts for this and all episodes at healthcommunicationpartners .com. Help us grow the show. Share this with your networks. Subscribe, rate, and review. Or donate. Now our next episode is our eighth podcasting anniversary episode. I could not make this up. I can’t believe it’s happening at this time. And it’s also health literacy month. So be sure to tune in. This has been 10 Minutes to Better Patient Communication from Health Communication Partners, Audio Engineering and Music from Joe Liebel, Additional Music from Alexis Rounds.

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