American Indians suffer disproportional disease burden from chronic conditions such as Type 2 diabetes (hereinafter “diabetes”). In response to this health crisis, the United States Congress implemented the Special Diabetes Program for Indians (SDPI), a community-based demonstration project to help patients prevent diabetes and reduce risk for cardiovascular disease. This paper describes how intervention case managers at one SDPI site, the Yakama Healthy Heart Program (YHHP), conceptualized culturally responsive intervention strategies, and patient, system, and cultural factors that impact participation in the SDPI intervention.
Methods: Thematic analyses of qualitative data derived from focus groups comprised of three categories: retained participants, non-retained participants, and intervention case managers.
Findings: Recommendations to inform an American Indian participatory medical model include: 1) reciprocity of individuals and systems must be implemented throughout all levels and for the duration of the intervention; 2) community champions need to serve as intervention leaders; and 3) institutional structures must promote relationship building between providers and patients within a community and cultural context. Our findings indicate that the unique structural qualities and community-engaged retention strategies of YHHP are critical to ensuring strong case manager-patient relationships, recruitment, and retention.
Keywords: American Indian, diabetes, cardiovascular disease, relationship building, Special Diabetes Program for Indians.
Citation: Jacob MM, Poole MJ, Gonzales K, Jim H, Duncan GE, Manson S. Exploring an American Indian participatory medical model. J Participat Med. 2015 May 27; 7:e8.
Published: May 27, 2015.
Competing Interests: The authors have declared that no competing interests exist.
Disparities, Mistrust, and the Need for Culturally Responsive Care
American Indians (AIs) experience striking disparities in the incidence and prevalence of diabetes compared to any racial-ethnic group in the United States.  Mitigating these disparities requires health care systems that combine both evidence-based practices of Western medicine and cultural norms regarding health and healing. There are many contradictions and seeming incompatibilities between the delivery of Western medicine and the cultural norms of AIs. These contradictions and incompatibilities are challenging, but also present opportunities to consider modifications of program structure and delivery. The parameters of participatory medicine, defined as a model of cooperative care that engages patients as “co-pilots” in the health care team, provides a promising framework for understanding barriers and solutions to improving health care processes, overcoming medical mistrust, and addressing health problems facing AIs. 
Medical mistrust, namely attitudes about the medical establishment, including trust in one’s provider and health care organizations, is an important health care barrier acknowledged by diverse populations. For example, Guadagnolo and colleagues found that more medical mistrust was reported among AIs compared to whites, and that race was the only factor correlated with greater mistrust and less satisfaction with health care.  Addressing medical mistrust is important in the context of participatory medicine because it likely influences patient engagement, participation, and adherence to provider recommendations. Buchwald and colleagues found that among a sample of 319 American Indians and Alaska Natives (AI/ANs), the odds of participation in health research increased if led by researchers of indigenous descent or staff whom the participants trusted.  In contrast, AI/ANs were less likely to participate if they believed confidentiality would be compromised, or if the study was led by the federal government. Indigenous peoples’ mistrust towards the federal government reflects a culturally-based, critical understanding of history and colonization. Inadequate medical care is a frequent aspect of colonization, including substandard health care resulting from chronic under-funding. 
American Indian health remains closely tied to the federal government, which is responsible for providing health care for members of federally recognized AI tribes. This was established by treaties between sovereign Indian nations and the US government. While critics have argued that this historical legacy has had a lasting impact on contemporary indigenous peoples’ health and use of health care, no study has explored what an AI participatory medical model might look like.  If we hope to encourage participatory medicine in the AI population, we must begin to understand the factors that empower AI patients and processes that facilitate bi-directional engagement between patients and providers. In this paper we seek to promote AI participation and empowerment by identifying these factors within their health care system.
Setting: The Yakama Healthy Heart Program
This study was conducted in the Yakama Healthy Heart Program (YHHP), located at the Yakama Indian Health Service Clinic on the Yakama Reservation in rural, south-central Washington State. The Yakama Reservation is located on the ancestral homeland of the 14 Confederated Tribes and Bands of the Yakama Nation. Tribal members retain the treaty rights to fish, hunt, gather, and access spiritually significant places in the surrounding Yakama homeland areas that were ceded in the Treaty of 1855. The Yakama people have strong cultural connections to the land and rivers, with salmon, deer, berries, and roots as sacred traditional foods that remain important to the Yakama culture and peoples.
The YHHP is part of the Special Diabetes Program for Indians Healthy Heart (SDPI-HH) demonstration project, a competitive grant program funded by the US Congress and administered by the Indian Health Service. The background of the SDPI is described elsewhere.  Briefly, the SDPI-HH seeks to reduce cardiovascular risk among AI/ANs with Type 2 diabetes. The SDPI-HH is delivered through 30 health care facilities that serve AI/ANs. Each SDPI-HH program administers the intervention within its respective health care facility. All 30 of these programs provide a suite of standardized health care services for cardiovascular risk reduction. Case managers are central to this intervention; they provide and coordinate intensive case management to help participants monitor and control their diabetes through monthly visits to the intervention site and engagement with intervention activities; assessment of blood sugar and blood pressure; patient education regarding exercise and nutrition. Beyond these standard services, the programs have the flexibility to culturally tailor the delivery of these services to best serve their respective populations. The YHHP provides a community-based component comprised of physical activity events that welcome family and community participation and occur across the tribal reservation. Examples include walking and running events, family track meets, tai chi, ballroom dance classes, and powwow dance classes. See Figure 1 for an example of a community events outreach poster. Figure 2 shows one of the clinic staff running in the mile race at a family track meet.
The YHHP is embedded within the Yakama Indian Health Service Clinic. YHHP staff is comprised of pharmacist-case managers, whose role is to assist patients with accessing prescriptions, contact patients to arrange monthly diabetes-related appointments, and provide patients with followup and support to maximize their adherence to provider recommendations related to diabetes management and cardiovascular risk reduction. Case managers serve as an important point of contact for YHHP patients that are under diabetes care within the clinic.
Enrollment within the YHHP began in 2006 and is ongoing. Participants typically are recruited during primary care visits and are referred by their physicians. Upon initial enrollment and over the first 12 months of the intervention, participants meet monthly with their case manager. After 12 months, if YHHP participants meet treatment goals, the frequency of their visits may be reduced to once quarterly. If participants miss an appointment at any point during the intervention, the case manager immediately attempts to reschedule, and continues to reschedule up to one month after the missed appointment. YHHP participants are retained for as long as they are willing to continue meeting with their case manager, with no official “end date.” YHHP patients who fail to continue meeting with their case manager beyond one month of staff efforts to reschedule, or who are otherwise lost to follow up, are designated as “dropouts” in YHHP records and classified as non-retained for the purposes of this study.
Eligible Participants, Sample Selection, Survey Administration, and Incentive
Our study’s data were obtained from YHHP-participants and case managers through a self-administered survey and focus groups. We report focus group findings in this manuscript; we discuss some trends found in the survey data, but our small sample size did not yield statistically significant survey data. In regard to the YHHP-participants, a random sample of patients who were retained in the YHHP program (n=30) and non-retained enrollees (n=5) enrollees were recruited to participate in focus groups. All YHHP-participants were American Indian, 80% of whom were enrolled members of the Yakama Nation. A focus group comprised of 10 YHHP Case Managers also was conducted. All YHHP case managers self-identified as non-Indian. Over half (58%) of YHHP-participants and YHHP-Diabetes Cases Managers were women, and ranged from 32 years old to 84 years old, with the average age of 59 years. Total enrollment for YHHP is 367 participants, 51% of which were female. According to YHHP records, at the time of enrollment, 8% of patients were 18-40 years old, 18% were 40-49 years old, 33% were 50-59 years old, and 41% were 60 years or older. Fifty-three participants dropped out less than 12 months after enrolling in the program; 23 dropouts have subsequently died, moved away from the service area, or been institutionalized, while 30 dropouts still live in the area and have working phone numbers on file with YHH staff. Research design, data collection instruments, and human subjects protocols used in this particular study were approved by the Yakama Nation Health, Education, and Welfare Committee; Yakama Nation Tribal Council; as well as the Institutional Review Boards of the Indian Health Service, the University of Colorado-Denver, and University of San Diego. Study findings were presented and approved for publication at the Yakama Healthy Heart Program and Yakama Nation Tribal Council.
Focus group questions examined the following domains: Satisfaction with Health Care Interaction, Medical Mistrust, and Access Barriers. Our work was guided by the following conceptual model (see Figure 3).
Through focus groups, we were particularly interested in learning about factors within YHHP that served to empower the AI participants, the processes that facilitate bi-directional engagement between patients and providers, and how these attributes create a more effective indigenous-focused participatory medical model. We sought to identify the parameters of participatory medicine which were particularly helpful in fostering patient success in YHHP (see Table 1).
Recruitment for the focus groups involved a mailed information packet containing a letter explaining the study, a consent form, a demographic survey, an optional form to enroll in a focus group, and a stamped pre-addressed envelope in which to return the items. Beginning 2 weeks after mailing these items, the research staff contacted each person by telephone, up to three times during the following 9 months. Upon receipt of the signed consent and completed survey, each participant was mailed a $15 grocery store gift card. Participants who volunteered to participate in a focus group were contacted and scheduled into a group.
Three separate focus groups were conducted: one for retained YHHP participants, one for non-retained YHHP participants, and one for YHHP case managers. All ten case managers were recruited via a brief presentation given by the lead author at a regularly scheduled staff meeting.
All focus group members discussed questions about their participation in YHHP. Large poster paper with one question written at the top of each page was used during the focus group sessions to stimulate sharing. After reading the question, participants were encouraged to share thoughts and experiences in the YHHP. These data were then summarized on the poster paper, which was taped on walls around the room, and used for participants’ review and further comment. This process continued until all questions were answered. The focus groups were completed by asking each participant to vote for the most important factors related to retention in the YHHP program. Each participant was given five stickers to indicate their votes by placing stickers next to the top influences on patient retention or drop out from their personal perspective. Participants were told they may place stickers next to any item on the posters, including placing multiple stickers by a single item. After they completed their votes, participants discussed their voting patterns and these narratives were audio recorded and transcribed. YHHP participants and case managers also completed a brief demographic questionnaire. Poster responses and the transcript were manually coded for themes and analyzed using a grounded theory approach.  This process was used for all focus groups. (See Tables 1 and 2 for results from participant and case manager focus groups, respectively).
In this section we discuss our study’s findings in terms of the relevant Parameters of Participatory Medicine in order to explore what an AI Indigenous-participatory medical model might look like. Our findings described in Table 3 highlight three of the Parameters of Participatory Medicine (PPM).
Our findings suggest that the structure of the Case Management System at the YHHP site provides (PPM I) opportunities for participants and staff members to interact effectively, invoking better communication that increase patient access to important information and help; (PPM II) professionals that monitor medication reconciliation and rapid identification of complications with appropriate referral mechanisms; and (PPM III) the institutional support of strategies that are educational, respectful of culture, that encourage community and family, and address access barriers to ensure open participation for all community members.
The relationship-building components of the YHHP provide opportunities for participants and staff members to interact effectively through better communication. All patients discussed the importance of their case manager for learning new information about both diabetes and healthy lifestyles for themselves. Patients also shared this health information with their family members, which reduced mistrust between the broader community and health care staff. Staff confirmed the importance of creating a medical home, where participants knew how to access information and care. Staff discussed the use of phone calls for outreach and follow-up as a way to increase patient adherence and also to build relationships with their patients. Monthly appointments and community events also increased participation. In short, individualized and frequent communication opens the door for sharing valuable information between patient and provider, patient and family, and family and provider. Overall, communication is facilitated by the highly structured case management system of close, monthly follow-up and frequent phone calls.
Case managers closely monitor participants, which appears to be a strong factor in participant satisfaction. Due to increased regular contact, case managers can rapidly identify complications and provide referrals and medication reconciliation. This system increases the effectiveness of diabetes management and provides a more satisfactory experience for patients. The case management system provides close monthly monitoring that includes a medication reconciliation and management program that facilitates acquisition and interaction between pharmacists as case managers. This structure along with monthly appointments, phone calls, and paying close attention to key diabetic signs and symptoms (eg, evaluation of the feet and eyes) provides patients with better health outcomes and a more pleasant experience at the clinic. One patient explained:
He [provider] calls me and he encourages me and provides me with information. And I participate in Healthy Heart because it helps me control my sugar levels. I do my toe checkups and my eye checkups and my teeth and dental, and all these are pertinent to our health because if we have bad teeth it could affect our hearts. And I like the Healthy Heart staff because they are thorough and knowledgeable and I’m really glad to be a participant of Healthy Heart.
Monthly appointments with (case managers who are well-trained in evaluating diabetic complications provide close monitoring and rapid identification of problems with fast referrals for intervention. The benefits of this structure are reflected in this excerpt from a patient, who credited his provider with encouraging him to maintain a healthy weight and also with restoring his eyesight:
[YHHP] keeps your interests up and your diets, your weight. And then the constant checkups for teeth and so forth. I lost my eyesight for a period but then that was mostly cured because they caught it early enough.
A final parameter relates to the institutional support of strategies that are educational, respectful of culture, encourage community and family, and address access barriers to ensure that participation is open for all community members. Our pilot project’s findings revealed that communication strategies open the door for sharing valuable information between participant and staff, and participant and family. Communication and interactions occurred through participation in community and cultural events and activities. The lead case manager, identified by all staff members as a community champion, included key tribal members and elders who had cultural skill and knowledge in traditional practices to serve as advisors and leaders in the program planning process. This was possible due to excellent paths of communication and a case management system that includes not only activities in the health care setting but also culturally specific events and activities within the community. The staff emphasized that a key element to community building was the presence of a community champion, someone who was respectful to community dynamics, cultural traditions and values. Without a community champion, the best intentions could have had little or no impact. A community champion is critical for creating and maintaining a culturally responsive program. Clinics who serve AI communities need to prioritize the hiring and retention of community champions on their staff. A community champion has knowledge of local cultural traditions and a strong network of elders and advisors who will help guide the program so that it best serves the AI community. Clinic leadership must prioritize the skills and knowledge that a community champion brings to a program.
Racial and ethnic identity are critical considerations in health interventions. The relationship between ethnic identity and medical mistrust leads to poor adherence and poor outcomes, including low level of patient satisfaction. Findings from retained members and staff indicate that respect for ethnic identity and culture may positively impact patient engagement. The findings suggest that this sensitivity helps to alleviate medical mistrust and increases satisfaction and is a key contribution to the success of YHHP. Through culturally responsible programming (such as incorporating traditional indigenous foods into activities and discussions of healthy lifestyles) patients’ identities affirmed. And providers are able to learn about and appreciate the land, culture, and community in which they practice. Also, by featuring programming that focuses on local indigenous traditions, elders and community members are respected as teachers who have valuable knowledge to share. Taken together, the culturally responsive components of YHHP continue to help us to explore the meaning and importance of an American Indian participatory medical model.
While these findings focus on the perspectives of providers and retained patients, we also sought further insight from non-retained patients. YHHP is located in a rural and socioeconomically poor setting. Providers understood how using incentives could help patients overcome access barriers and could also promote retention within the program. Access barriers were higher among non-retained members for all seven of the access barriers we asked about on the surveys: transportation, getting an appointment when needed, clinic hours of operation, work or family obligations, childcare, preferred doctor availability, and preferred case manager availability. However, even for retained enrollees, several access barriers are important: 21% report transportation is a barrier, 17% report getting an appointment when needed is a barrier, and 38% report work or family obligations are a barrier. Respondents did not name traditional cultural activities (eg, being away from the clinic area for fishing, hunting, or gathering) as barriers. However, given the seasonal nature of these activities and the realities of limited budgets it is possible that participants may choose to drive to the traditional fishing areas instead of putting gas money towards a trip to the clinic. Incentives were discussed by non-retained participants and the case management staff as a way to provide the “extra push” for participation, adherence, and retention. Non-retained members discussed the following incentives specifically: gas vouchers and food vouchers. Additionally, non-retained participants provided suggestions for program improvement. These included recognition for achieving milestones and goals (eg, banquet, some type of material reward for reaching a goal). They also suggested a newsletter with information, and creation of family activities and events in which to participate. These insights suggest that YHHP staff are on the right track for meeting the needs of the patient population. Incentives assist patients in overcoming barriers, many of which are quite challenging and persistent. Non-retained participants stated that additional incentives would be helpful for increasing their participation and retention within the program.
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Copyright: © 2015 Michelle Marie Jacob, Mary Jo Poole, Kelly Gonzales, Haver Jim, Glen E. Duncan, and Spero Manson. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.