Alaska Native (AN) people have among the highest rates of colorectal cancer (CRC) recorded globally. CRC is the second leading cancer among AN people, accounting for 18% of cancers, with an incidence rate of 90.9 per 100 000 (95% CI, 81.3-101.7; 2009-2013).1 Furthermore, CRC is second only to lung cancer in terms of cancer mortality, accounting for 14% of cancer deaths (mortality rate 2007-2011: 31.3; 95% CI, 23.4-41.4).1 Importantly, both incidence of and mortality from CRC are 2-fold higher among AN people than among US whites; this disparity has persisted for more than 30 years.1
Preventing CRC is an important health priority of AN tribal health leaders and communities. Screening can prevent development of CRC through the identification and removal of colorectal polyps before they develop into cancer.2 Screening also reduces cancer burden by diagnosing disease at earlier stages when it is easier to treat.2 The Alaska Native Tribal Health Consortium (ANTHC), in collaboration with regional tribal health partners across the state, has focused substantial efforts to promote CRC screening for AN people. During 2009-2015, ANTHC received Centers for Disease Control and Prevention (CDC) funding to create an Alaska Native CRC control program.3 This program involved a multitude of activities, including direct screening services, patient navigation, community and provider education, and systems and policy changes to increase CRC screening among AN people. In addition, in 2013, the Alaska Native Medical Center (ANMC) issued CRC screening guidelines recommending that screening for AN people start earlier, at the age of 40 years, after data were released demonstrating the higher incidence of CRC among AN people aged 40 to 50 years than among US whites.4 As of 2016, 61.4% of AN people aged 50 to 75 years met CRC screening recommendations, up from 47.2% in 2008.5
Despite these successes with secondary CRC prevention, primary prevention efforts have received less attention, in part, because risk and protective factors for CRC among AN people remain understudied. Potential factors include the AN traditional subsistence diet, which includes more smoked fish and marine mammals than the US general population,6,7 and limited access to fresh fruits and vegetables.6,8,9 In addition, AN people have twice the prevalence of smoking as US whites,10,11 and many southwest AN communities also use iq'mik, a chewing tobacco made by mixing tobacco with the ash of the fungus Phellinus igniarius.11,12 Furthermore, the extreme weather and far north latitude may influence other lifestyle factors such as physical activity, sleep patterns, and time spent indoors. Finally, genetics is known to play an important role in the etiology of CRC, with up to 35% of CRC risk explained by heritable factors.13–16 Yet, only one study has examined genetic risk factors for CRC among AN people. That study evaluated the frequency of defective DNA mismatch repair and microsatellite instability but did not find genetic differences between AN people and other populations.17 To comprehensively address CRC disparities among AN people, a holistic approach is needed whereby primary prevention methods, incorporating a thorough understanding of AN-specific disease etiology, complement existing secondary prevention programs.
We have been working to establish a tribally led, community-based, comprehensive investigation of lifestyle and genetic risk and protective factors for CRC among AN people. This study is being conducted by staff at the Alaska Native Epidemiology Center, ANTHC, in collaboration with the Fred Hutchinson Cancer Research Center (FHCRC; Seattle, Washington), and tribal health partners across Alaska. ANTHC is a part of the Alaska Tribal Health System and comanages the ANMC, which provides the majority of cancer care and treatment to AN people. Surveillance and applied epidemiology studies, including the present research, is one of the Alaska Native Epidemiology Center's 4 core functions that serve as a framework for our activities to improve the health of AN people. We are partnering with the FHCRC because they have extensive experience in cancer genomics research and have worked previously on similar projects with small populations. Because of ongoing concerns regarding biospecimens and genetic research conducted with Native American communities,18–20 we are using a community-based participatory research (CBPR) framework to guide our research program.21 Herein, we describe the process used to incorporate tribal health system staff feedback on our proposed research, specifically the genetic aspect, as well as information gathered from the literature. We used this information to guide our study design and protocol development. This process description is intended to provide guidance to other researchers working to establish community-based studies of cancer risk.
We collected feedback from key stakeholders across the Alaska Native Health Campus (ANHC) in Anchorage, Alaska, and reviewed literature on research with Native communities to help better understand AN community perspectives on genetic research, assess feasibility of the proposed study, and gather feedback on study design and protocols. Institutional review board (IRB) review was not sought for these formative conversations, as they were conducted to guide the research development process. The resulting protocols were approved by the Alaska Area IRB and received tribal review and clearance from ANTHC and Southcentral Foundation (SCF). This process article also received tribal approval from both ANTHC and SCF.
It is important to understand the range of perspectives in developing a clinical research study, especially in tribal communities. We engaged more than 15 individuals from institutions across the ANHC, including ANTHC, SCF, and the CDC Arctic Investigations Program, which comanages the Alaska Area Specimen Bank in collaboration with ANTHC. Individuals held a broad range of roles, including researcher, tribal health leader, clinician, clinic manager, biobank staff, and laboratory staff. For our conversations, it was important to include AN perspectives wherever possible; many of the individuals whom we interviewed identified as AN community members, in addition to their professional role within the tribal health system. Beyond those individuals who were initially identified as potential key informants, a snowball sampling technique22 was used to identify others, until all identified key informants had either participated or declined to participate.
Using a grounded theory approach,23 we conducted all conversations in person using an unstructured question format to elicit multiple perspectives. The conversations were not recorded, but notes were taken and collated immediately after the conversations were completed. In-person conversations were preferred because of their ability to enhance the relationship building process, which is central to the success of community-engaged research.24,25 Question domains included perceptions of the proposed research, previous research experiences, and suggestions for the development of a feasible and culturally appropriate research protocol. We were particularly interested in perceptions of, and suggestions for, conducting successful genetic research with AN people. Each conversation lasted approximately 30 to 60 minutes. Upon completion of the conversations and literature review, the study team identified major themes for incorporation into the study design.
Themes that arose during key informant conversations and the literature review included the importance of the translational nature of the research, obtaining feedback from study participants, the importance of the informed consent process, study impact on clinical workflow, appropriate use of biospecimens, tribal ownership of data, and sharing study results back with the community. Here, we give a brief description of these themes, with discussion points from the primary literature.
Theme 1: Translational nature of research
The National Center for Advancing Translational Sciences defines translation as “The process of turning observations in the laboratory, clinic, and community into interventions that improve the health of individuals and the public—from diagnostics and therapeutics to medical procedures and behavioral changes.”26 Translation of research findings is part of the tribal approval process of ANTHC and other tribal health organizations (THOs) throughout Alaska. Researchers must demonstrate how their study will improve the health of AN people. Taking this one step further, it has been previously noted that the motivations of the researcher are important to AN people20; it is imperative not only that the research benefit the community but also that researchers are conducting the research for this purpose, rather than for profit, publication, or to advance their career.20 The overarching goal of the research study presented here was to identify risk or protective factors for CRC among AN people that can provide the basis of prevention programs, or risk stratification models, which could then be used in clinical practice to guide screening decisions.
Theme 2: Community and study participant feedback
One important aspect of CBPR research is incorporating views of community members, including study participants, into research design.27 Key informants (many of whom were AN community members themselves) noted the importance of requesting feedback from study participants and incorporating that feedback into continuous study improvement. To address this, we created an optional participant feedback form that would be used to gather participant feedback on their study experience. The form included questions on the duration of the study visit, the number of biospecimens collected, and participant thoughts on any additional CRC risk or protective factors not assessed during the study visit. We also incorporated into our consent form an opportunity for study participants to provide contact information for a study newsletter, through which study progress and findings would be disseminated. Moving forward, we plan to collect additional qualitative information from study participants through focus groups, as well as key informant interviews with clinical staff on their experience interacting with the study. To facilitate this, we included a recontact option on our consent form.
A community advisory board (CAB) can also be a valuable resource to researchers for incorporating community member thoughts and feedback throughout the research process.28,29 During our conversations, several individuals emphasized the potential for a CAB to be informative to this study throughout the research process. The format of this CAB is still under discussion; however, it is likely to include both American Indian (AI)/AN community members, as well as a group of scientific advisory members (AI/AN or non-Native health practitioners) from interested regional THOs across Alaska. The CAB will be engaged in study planning activities, as well as ongoing activities such as data interpretation, and mechanisms for data sharing and dissemination.
It should also be noted that all research conducted with AN people must have tribal review and approval before dissemination or publication of results.30 This review process provides an additional opportunity to incorporate tribal feedback at the community level; each member of ANTHC and/or regional research review bodies is an AN tribal member. Furthermore, because considerations may differ across communities, tribes, and regions, it is imperative that each study undergo its own individual process of collecting study feedback.
Theme 3: Informed consent process
The importance of the consent process cannot be understated; for this reason, it is a central component of the IRB review process.31 Study participants must understand the nature of the research in which they are participating and the implications of their participation. They should also understand that their participation is voluntary and that they can withdraw at any time without affecting receipt of clinical care. Because our proposed study involved genetic testing, long-term storage, and biospecimen analyses, key informants suggested that participants might need more time to understand and digest the consent form and might need additional opportunities to discuss their potential participation in the research with friends and family members.
For research involving biospecimens, including the present study, it is particularly important that the participant understand how their specimens will be stored and for how long.20,32 At the ANHC, there is the option for long-term storage (biobanking) of biospecimens at the Alaska Area Specimen Bank.33 It is required, including in our study, that participants sign a separate consent for this long-term storage and investigators have to very clearly describe the distinction between study consent and biobanking consent. Participants need to be informed what tests would be done on their specimens and where the analysis would occur (ie, whether the specimens would be tested on-site or sent to an off-site partner). Because of this, we also included in our consent form an option for participants to consent to future CRC-related testing of specimens, given IRB and tribal approval for such testing. This enabled us to incorporate new technologies into our research study as they develop, without the need for additional re-consent.
Theme 4: Impact on clinical workflow
Researchers need to consider the potential impact of their research study on clinical workflow and health care delivery. Incorporating conversations with clinical staff who would be interacting with our research study through these procedures enabled us to better understand how we might refine study protocols to minimize disruptions to their clinical duties. The snowball sampling protocol was particularly useful in our interactions with clinical staff, as there were aspects of clinical workflow of which we were unaware but which would turn out to be critical to study protocol development. For example, we learned of a major construction update planned for the CRC screening clinic, which might affect space available to meet study participants. Furthermore, buy-in from clinical staff, particularly those staff who would be directly interacting with the study, is imperative to the successful implementation of any clinical research study. Establishing relationships with clinic staff at the outset was important for our study, as these staff members may become our champions during study recruitment. Finally, we also learned during these conversations that another research study would be recruiting from the ANMC CRC screening clinic simultaneously to our proposed study. Therefore, it was imperative that we work with research study staff and clinical staff to ensure that both studies could take place in harmony, with minimal impact on provision of clinical care to patients. For example, it was agreed that the other research study would have priority for participant recruitment, as their criteria for eligibility were more restrictive than we had planned for the present study. Furthermore, daily communication between study staff was essential to ensure that there was no overlap in eligible patients, recruitment requests, or other interactions with clinic staff that would affect workflow.
As currently envisioned, we will recruit study participants through the ANMC CRC Screening Clinic during their precolonoscopy clinical appointment. Individuals would then be consented and ideally complete the study visit in-clinic immediately postappointment. During the study visit, participants would be asked to complete a lifestyle and medical history questionnaire, a validated and culturally appropriate food frequency questionnaire,34 and the Automated Self-Administered 24-hour Dietary Assessment tool (ASA24; National Cancer Institute, Bethesda, Maryland)35 before biospecimen collection. This interview process is expected to take 1.5 to 3 hours of participant time. Finally, we will collect a biopsy specimen during participants' colonoscopies, typically 1 to 7 days post–study visit.
Theme 5: Appropriate use of biospecimens
AN attitudes toward biological specimen research has been the subject of several qualitative studies,20,36,37 in which AN people recognized both benefits and potential harms of this kind of research. As discussed earlier, the informed consent process was critical to making sure that participants understand and agree with study specimen collection, storage, and use procedures. Earlier work showed desire by AN people to be given a “date of destruction” for their biospecimens,20 which could be incorporated into consent forms, if desired.
Importantly, there is concern among AN community members that biospecimen analyses could result in a breach of confidentiality for both the individual and the community or that genetic test information collected during clinical practice or research could be misused or result in stigma.36 Previous examples, such as the Havasupai case,18,38 have illustrated the potential harms of genetic testing among AI/AN people and have understandably led to community reticence to participate in such research. In response to these concerns, our protocol included a strict policy of only examining genetic risk factors relevant to CRC. Furthermore, our protocol described the process by which tribal partners would be engaged throughout the process of data analysis and interpretation to minimize the risk of inadvertent harm or misinterpretation of data. Further detail on the ethical conduct of genomic research with Native communities is given elsewhere.39
Theme 6: Tribal ownership of data, particularly genetic data
Data ownership was a preeminent theme in our formative conversations. It is important to recognize tribal ownership of data that would be generated by the research study.32,40 Recognizing tribal ownership of data respects tribal sovereignty and is key in ensuring that tribal voices are heard throughout the process of data analysis, interpretation, and dissemination, as well as directing any secondary uses of data and biospecimens. To ensure that all research partners are in agreement regarding tribal ownership of data, material transfer and/or data sharing agreements need to be constructed carefully to protect tribal interests. To this end, we worked extensively with our study partners, as well as ANTHC legal counsel, to generate material transfer agreements that not only were amenable to all research partners but also protected AN tribal interests. For example, the basis for our data sharing agreements remained tribal ownership of data; however, we also included provisions for collaborative publication and presentation of research results between ANTHC and its research partners, including FHCRC. All data use and sharing agreements also included provisions for tribal review and approval of all manuscripts, abstracts, and dissemination materials. Engaging research collaborators who understand the nuances of conducting research involving biospecimens among tribal communities was essential to the success of this process.
Consideration of tribal wishes regarding data ownership must be considered very early in the research process; researchers applying for federal funding to support their research are advised to incorporate such language into their Data Sharing Plans as part of their funding application. Once data are collected, a waiver of submission to public databases may be required or a modification of the requirements discussed with the National Institutes of Health (NIH) and the tribal community. To address tribal ownership of data, we plan to request a waiver of submission to the Database of Genotypes and Phenotypes (dbGaP) (for genetic information) and work with our tribal partners to create NIH-appropriate data sharing plans that allow for collaboration while respecting tribal sovereignty.
Theme 7: Incorporating plans for sharing study results with the AN community into study design
Return of research findings to study participants and communities is a central tenet of CBPR, especially for tribal communities,41 and has been identified as a key priority of AN community members participating in research.20,37,42 AI/AN communities have expressed frustration at “helicopter researchers” who visit a community, collect information, and leave, never to be seen or heard from again.43,44 Data dissemination and results sharing must be considered upfront as part of the study design rather than post hoc once the data have been collected. Researchers should consider what data are to be shared (eg, individual vs summary results),45 who the data will be shared with, as well as what mechanisms are most appropriate for each audience. Importantly, dissemination should be considered a dialogue between researcher and the community; this supports both the advancement of scientific knowledge and community benefit.42
In our formative process, we returned to the individuals with whom we spoke and shared with them how their feedback was incorporated in our study design and/or protocols or why we decided to take an alternative approach. We also began a data dissemination plan to be incorporated into our study protocol that would direct how we share study progress and results with tribal health leaders, study participants, clinicians, and community members. As stated earlier, each study participant was given the opportunity to “opt in” to receive a study newsletter during the consent process. We plan to disseminate study updates and summary results to interested participants at least annually through this mechanism. We also plan to share aggregated results with clinicians and tribal health leaders through presentations, written executive summaries, and one-on-one meetings with tribal health leaders as appropriate. We will communicate study results through a variety of written and spoken media formats, including social media. Researchers should consider other media channels, such as radio, that may be appropriate for their community. Finally, this data dissemination plan should be dynamic and incorporate community input throughout the duration of the study.
Conclusions and Next Steps
There are many mechanisms available for engaging communities in study design and conduct. We began our process by conducting formative conversations and a literature review that were used to create the formal study protocol. Moving forward, we are currently in the process of developing a CAB for the next phase of the study. Wherever possible, AI/AN research staff will be engaged in the conduct of this research, for example, in data collection, data analysis, and results reporting. We also plan to conduct focus groups and key informant interviews with individuals who participate in our pilot study, as well as clinicians who support the study, respectively, in order to gather their thoughts on how the process can be improved and what they would like to see from this research. Finally, tribal health leaders, including many of the individuals engaged in the formative conversations described herein, will be consulted throughout the data analysis, interpretation, and dissemination phases and all materials arising from this research will undergo the process of tribal review and approval by ANTHC and all participating regional THOs.
The process of community engagement must be ongoing throughout the life of a research study. Here, we have described the formative process for a study of CRC risk among AN people; however, it is important to note that this represents only the beginning steps of our proposed community engagement plan. The iterative process of engaging and collaborating with the community will continue throughout data collection, analysis, interpretation, and dissemination phases of the research. By incorporating AN voices and perspectives throughout the entire process of our study, we work to ensure that the research is collaborative, respectful, and community-engaged.
Implications for Policy & Practice
- Engaging with the community is important when working to establish community-based studies of cancer risk, particularly among tribal communities.
- Studies need to show how they will improve the health of tribal people, as well as obtain ongoing study participant and community feedback throughout the study process. The informed consent process is also vital in helping communicate with potential participants about the study, especially if it involves genetic specimen collection and long-term biospecimen storage.
- Tribal ownership of data, particularly genetic data, must be addressed early in the research process and incorporated in data sharing plans. Finally, study results must be shared with the community through appropriate channels. The process of engaging and collaborating with the community should be iterative and continue throughout the data collection, analysis, interpretation, and dissemination phases of the research.
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