Investigating Risk Factors for Colorectal Cancer Among Alaska Native People: Podcast with Drs. Sarah Nash and Diana Redwood
by Sheryl Monks
“[A]lthough our research study was specifically looking at risk and protective factors for colorectal cancer, the themes that we found through doing this formative research were things that I think all researchers might benefit from when they are working with tribal communities.”
Tribal Epidemiology Centers (TECs) were first established in 1996 by the Indian Health Service (IHS) to improve disease surveillance, infrastructure, and public health data for the American Indian/Alaska Native (AI/AN) population. Today, there are twelve TECs whose common mission is “to improve the health status of American Indians and Alaska Natives by identification and understanding of health risks and inequities, strengthening public health capacity, and assisting in disease prevention and control.”
The Journal of Public Health Management and Practice has just released a special supplement focusing on the work of TECs titled Tribal Epidemiology Centers: Advancing Public Health in Indian Country for Over 20 years.
I spoke with Sarah Nash, PhD, MPH, Director of Cancer Surveillance at the Alaska Native Tribal Health Consortium, and Diana Redwood, PhD, MPH, a Senior Epidemiologist at the Alaska Native Tribal Health Consortium, about their study, “Developing an Epidemiologic Study to Investigate Risk Factors for Colorectal Cancer Among Alaska Native People.“
The authors detail the methods for developing a comprehensive investigation of this nature and the key themes that arose during conversations with tribal health staff and literature review in the following podcast. Podcast Nash Redwood Tribal
JPHMP Direct: You note in your report that Alaska Native people have among the highest rates of colorectal cancer recorded globally, accounting for the second leading cancer among Alaska Native people with cancer mortality second only to lung cancer. For both incidence and mortality, colorectal cancer is twofold higher among Alaska Native people than US whites, a disparity that has persisted for over 30 years. What are some of the potential risk factors for colorectal cancer among Alaska Native people?
Dr. Nash: This study actually represents the beginning of the work that we’ve been doing to establish a research study just to answer that question. We don’t actually have answers for Alaska Native people specifically, so that’s what we’re trying to find out with our work. We think, at least in part, that risk and protective factors for colorectal cancer among Alaska Native people likely mirror those we see in other populations. So, for example, smoking, obesity, physical inactivity, aspects of dietary intake, and genetic factors as well. But what we’re really hoping to do is determine whether or not there are things specific to Alaska Native people that might also increase or decrease risk for colorectal cancer. So some of the things that we’re thinking about are the Alaska Native traditional diet, seasonal patches of sunlight exposure, and sleep, and how things vary with our long summers and our long winters. And also smokeless tobacco use, which is high among Alaska Native people, too. Podcast Nash Redwood Tribal
JPHMP Direct: Dr. Redwood, can you tell us about the framework for this study and why you chose this method? Podcast Nash Redwood Tribal
Dr. Redwood: Both Dr. Nash and I are at the Alaska Native Tribal Epidemiology Center. We’re one of 12 Tribal Epidemiology Centers nationwide, and we have a number of core functions that we do, such as data dissemination, technical assistance, disease prevention. One of them is surveillance and applied epi studies. So this work that we’ve been doing fits within our larger work at the epi center, where we’re trying to provide health data and health studies to the Alaska tribal health system. So one of the things we do within the tribal health system is try and have projects and research that is specifically beneficial to the health of Alaska Native people. That’s just an essential core for us. And the reason we chose community-based participatory research as our framework for this study is that it really incorporates a lot of the principles that we try to follow within the Alaska tribal health system, such as self determination and improving the health of the people. And this framework incorporates those ideals and then also produces a richer study because you are incorporating the feedback and perspective of tribal members and community members within the research process. So in some regards, I would say it was a no-brainer that we would use this framework because it so well incorporates the kinds of things we’re trying to do within our health care system. Podcast Nash Redwood Tribal
“[I]t was a learning experience to put it all together. Really the key things that rose from all of this work was basically seven themes: There was the translational nature of research, obtaining feedback from study participants, the importance of the informed consent process, not forgetting the study impact on the clinical workflow, appropriate use of biospecimens, tribal ownership of data, and lastly, and in some ways, most importantly, sharing study results back with the community.”
JPHMP Direct: Dr. Nash, can you tell us a little about some of the partners who worked with you on this study? Podcast Nash Redwood Tribal
Dr. Nash: Absolutely. Research is never conducted alone, so in addition to Diana and I, we have a really great group of partners, including our support from the Alaska Native Epidemiology Center. The work was funded by the American Indian/Alaska Native Clinical & Translation Research Program. This was a collaboration between Alaska and Montana to expand community-based and community-engaged research and research infrastructure among American Indian and Alaska Native communities in Alaska and Montana. So we had a lot of support from that group. I should also mention Dr. Riki Peters and her lab at the Fred Hutchinson Cancer Research Center. Dr. Peters and her team have really been co-collaborators of this work from the very beginning. They bring a lot of experience and a lot of expertise in the exploration of lifestyle and genetic aspects of cancer. So we’ve really enjoyed working with Dr. Peters and her lab. And then, of course, we have a lot of partners around the tribal health campus here in Anchorage. We have partners from the Southcentral Foundation, which is the tribal health care corporation that manages health care for South Central Alaska; from researchers here within the Alaska Native Tribal Health Consortium; and I also should not neglect to mention the clinical staff at the Alaska Native Medical Center. They really were critical in helping us with this work.
JPHMP Direct: Dr. Redwood, what were some of the key themes to arise from informant conversations and literature review? Podcast Nash Redwood Tribal
Dr. Redwood: As I mentioned before, we were trying to do this work within a community-based participatory research framework, partly because the study is trying to identify risk and protective factors for colorectal cancer among Alaska Native people. And one of the things we’re interested in exploring is whether there are unique genetics or other types of risk factors. There’s been a concern previously about biospecimen collection and genetic research conducted with Native American communities. So we were trying to do this process to really collect as much information as we could from a number of partners around the tribal health system. It was important to us that we included Alaska Native perspectives whenever possible. Many of the individuals we interviewed actually identified as Alaska Native community members in addition to also having a professional role within the tribal health system. There were a number of key themes that arose from these conversations and literature review, some of which your readers might already think of as important. But it was a learning experience to put it all together. Really the key things that rose from all of this work was basically seven themes: There was the translational nature of research, obtaining feedback from study participants, the importance of the informed consent process, not forgetting the study impact on the clinical workflow, appropriate use of biospecimens, tribal ownership of data, and lastly, and in some ways, most importantly, sharing study results back with the community. So in terms of the translational nature of research, again I have said previously, but it’s really important that researchers demonstrate how the study will improve the health of the tribal people that you are serving through your research and work. So that was something that really rose to the top. And our goal with our study is that we are trying to identify risk and protective factors for colorectal cancer, so we want that to be the basis for prevention programs or risk stratification models. We want the research itself not to sit in a silo but to actually then get put into practice within our health system. The second theme was looking more at community and participancy feedback. One of the things that our informants told us is that it’s important that you request feedback from study participants and that you incorporate that into your study design in a continuous manner. So that was something that we then altered our protocol and added in opportunities for participants to provide feedback, both within the study visits and also to provide their contact information so that we could follow up with them later, perhaps through focus groups or other methods to get more information. Another piece of that is engaging a community advisory board. This can be very helpful and important with tribal communities and tribal research… is to have a community advisory board that can provide input into your study design, results, and interpretation. Podcast Nash Redwood TribalAuthors of a new report investigating risk and protective factors of #colorectalcancer in Alaska Native people provide 7 key themes to help researchers in developing an epidemiologic study. Click To Tweet
The third theme was the informed consent process. And again this is something most researchers know very well, but it was brought home to us very much in our conversations with tribal staff, is that within the study, especially a study that involves genetics or biospeciman collection, it needs to be very clear in the informed consent process what participants in the study are consenting to. Obviously, participation is voluntary. But also how this will affect tribal communities, how long will this data be kept, what will it be used for, who will have access to it. These are very important things that need to be specified within your consent. The fourth theme was one that was sort of interesting, that studies don’t always think about how their work will impact the clinical workflow. I’ve definitely talked to other researchers that say I’m going to have this study, the person’s going to draw the blood for us, and then they’ll give it to us, and we’ll do this, that, and the other. And you ask them, well, how are those staff going to actually do that work on top of their existing clinical duties, the health care they’re providing to their people? So I think that’s one of the important things about this is thinking about how a study fits within a clinical practice if you’re doing one in the clinical setting. And so trying to get more buy-in from clinical staff and making the study flow as easily as possible within their important existing work. The fifth theme was the appropriate use of biospecimens. The informed consent process is critical here to make sure participants agree and understand the study specimen collection, storage, and use procedure. We had found out that there might be concern about biospecimen analysis or how data would be used, or could be used, and so it was very important that we be clear and make sure that we laid that out in our protocol, consent form, etc. In response to these concerns, our protocol included a strict policy of only examining genetic risk factors that were relevant specifically to colorectal cancer. The sixth theme was tribal ownership of data, particularly genetic data, and that was a very preeminent theme in our formative conversations. And it’s important, you know, recognizing tribal ownership of data. It respects tribal sovereignty, and it’s key in ensuring that tribal voices are heard throughout the process. So for all of our data, any results that we create, our manuscripts… all of that has to be approved by our tribal committees and review process. And I think that’s an important key to making sure that the information is kept respectfully within our system. The last theme was incorporating plans for sharing study results within and with the Alaska Native community, and making sure that that is in your study design. So again a lot of this paper was trying to share with other researchers key themes that we found when we were doing this work that we think might be helpful for others. And so returning the research findings to study participants… it is a central tenant of community-based participatory research, and it’s something that we really turn to again and again of how we can share the information that we get from the study back with people who participated and with tribal leadership.
JPHMP Direct: Dr. Nash, were there any surprising findings from your study?
Dr. Nash: I don’t know what Dr. Redwood thinks, but I don’t think I was surprised by any of the findings necessarily. But I will say that I was really heartened that these conversations reaffirmed some of the knowledge anecdotally that I’d gained working in the tribal health system over the past decade or so, as well as some of the previous research that has been conducted by folks here at ANTHC, over at Southcentral Foundation, and others within the tribal health system. Dr. Redwood has talked about some of the foundations of the research that we conducted in the Alaska Native tribal health system, and so I wouldn’t say that any of the findings were surprising. I would just say that they were, to me, reaffirming of some of these principles that we already try to adhere to and apply within our research.
“[O]ne of the really key things was the importance of clinical practice and making sure that our research is not interfering with clinical practice because ultimately what we want to be doing is improving the lives of Alaska Native people, and we want to be ensuring that we continue, as an institution, to deliver the highest quality health care possible alongside our research endeavors.”
JPHMP Direct: Dr. Redwood, what are some of the limitations of your study?
Dr. Redwood: I’d say the major limitation of the study is that these were formative conversations. We conducted these with the snowball technique where we’d ask one person that we talked to “Are there any other folks that we should talk to so that we could gain more information?” And we continued until we didn’t have any more people that they said they thought we should talk to. But in truth we could’ve expanded beyond the scope of just this area and talked to others within the tribal health system and their communities. So there are ways in which this could have been a much larger project. But I think what we were trying to do with this really was just to build the framework of what things should we be thinking about as we put our study together. This really was part of the formative part of our work, very much looking at how can we improve our study protocol so that once we build this larger study looking at risk and protective factors for colorectal cancer, what things, what elements do we need to have in the study so that it can be the best study it can be within the tribal community in which we work.
JPHMP Direct: And Dr. Nash, what are the implications of the study’s findings?
Dr. Nash: To me there are several implications, particularly for public health and research practice. I think the formative work definitely brought home to me the importance of community engagement, especially when working with tribal communities. And then a lot of these other implications I think came out of the themes that Dr. Redwood discussed. So the need for research within our communities to be translational. What is the impact that we’re going to see of the research? Obtaining ongoing study participant feedback throughout the study process. The importance of really thinking through, as a researcher, your informed consent process. I think that’s really key, and it’s something that maybe we tend to take for granted, but we really need to be sure that our participants are understanding what they’re signing up for and know they’re going to be involved in. And then also, making sure that they really understand, and that we’re really communicating well, the biospecimen and genetic analysis… what’s planned to be part of the study. Thinking about things in advance like who owns the data and tribal ownership of data, particularly genetic data, I think, really has to be addressed early on in the research process. Also, as Dr. Redwood was saying, thinking early on and planning into your study design, and into your study budget, things like the data dissemination and results dissemination, I think, are really important. And then, for me, one of the really key things was making sure that our research is not interfering with clinical practice because ultimately what we want to be doing is improving the lives of Alaska Native people, and we want to be ensuring that we continue, as an institution, to deliver the highest quality health care possible alongside our research endeavors. And then one of the other things I’ve also been thinking a lot about is how this process is really iterative. So this is really just the first step in our community engagement process. We had these formative conversations, but we continue to engage in community engagement activities… we have the community advisory board, we have a physician advisory board, we have been back to our pilot study participants and engaged in qualitative research… This process of community engagement is iterative, and I think it really is worthwhile to be continually getting community feedback to improve the study.
JPHMP Direct: Is there anything else you’d like to add?
Dr. Nash: I think I would just add that although our research study was specifically looking at risk and protective factors for colorectal cancer, the themes that we found through doing this formative research were things that I think all researchers might benefit from when they are working with tribal communities, such as respect and returning information back to people. So I guess I would have the suggestion to other researchers that they think about this as a real framework for working with indigenous people.
- Tribal Epidemiology Centers: Advancing Public Health in Indian Country for Over 20 Years
- The Role of Tribal Epidemiology Centers in Serving the Public Health Needs of American Indians and Alaska Natives
- CDC Partnerships With Tribal Epidemiology Centers to Improve the Health of American Indian and Alaska Native Communities
- Effect Modification of the Association Between Race and Stage at Colorectal Cancer Diagnosis by Socioeconomic Status
- Racial Misclassification in Mortality Records Among American Indians/Alaska Natives in Oklahoma From 1991 to 2015
Sheryl Monks is the Editorial Associate of the Journal of Public Health Management & Practice. She manages JPHMP Direct.