Creating Collaborations:
Partnering with Tribal Community Health Representatives for Health Research and Education

May 12, 2009

MS Word Version

Executive Summary

Speakers

Mimi Lising, M.P.H., NIAMS Office of Communications and Public Liaison (OCPL)
Stephen I. Katz, M.D., Ph.D., Director, NIAMS
John Burklow, M.P.H., Associate Director for Communications and Public Liaison, NIH
Janet Austin, Ph.D., Co-Chair, Trans-NIH Health Communications and Information Work Group; Director, NIAMS OCPL
Cathy Stueckemann, J.D., M.P.A., National Director, Indian Health Service (IHS) Community Health Representative (CHR) Program
Melany Cueva, R.N., Ed.D., Alaska Native Tribal Health Consortium (ANTHC)
Jean Pino, R.N. Community Health Representative Coordinator, Five Sandoval Indian Pueblos

Meeting Objectives

  • To gain an understanding of the health issues that American Indians and Alaska Natives (AI/ANs) face and of the Indian Health Service system from which they obtain their care.
  • To understand the vital role Community Health Representatives (CHRs) play in developing, implementing, and evaluating methods of adapting and communicating health information, as well as their importance for building collaborative relationships between tribal communities and researchers.
  • To gain the perspective of CHRs on developing culturally attuned materials and effectively disseminating evidence-based health education information to AI/AN communities.
  • To learn about successful research-based outreach and education programs that partner with CHRs.

Invocation and Introductory Remarks

Mimi Lising welcomed the participants on behalf of the trans-NIH American Indian/Alaska Native (AI/AN) Health Communications and Information Workgroup, and introduced Dr. Anselm Davis, Jr. who gave the invocation, using a drum and a traditional song to invoke creative thinking on behalf of Native peoples.

Dr. Stephen Katz then gave opening remarks, emphasizing the importance of communication. "The bottom line," he said, "is that all the work we do at NIH is worthless unless we can communicate it. And communicating to different populations is really what it's all about." He asked the participants, who had traveled from Alaska, New Mexico, Arizona and Oklahoma to educate the NIH, so that "we are communicating in the best possible way."

NIH Office of Communications and Public Liaison

John Burklow presented an overview of the kinds of outreach the NIH Office of Communications and Public Liaison does, and stressed the work of the Council of Public Representatives (COPR), members of the public who advise the NIH Director. He said, "The COPR members really bring their community to us, and then they bring us out into their community. They give us a better understanding of the populations we're trying to reach." He used as an example the NIH-sponsored trip to Alaska where outreach staff were able to interact directly with community representatives on health education matters. Mr. Burklow also cited an NIH initiative to bring health educators from AI/AN communities to spend time at La Clinica del Pueblo, a NIAMS-supported Community Health Center in Washington, DC. In addition to these knowledge-sharing exchange trips, NIH operates a health information kiosk in the Jackson Medical Mall in Jackson, Mississippi, and participates in numerous community health fairs around the country in an effort to interact with the communities it serves.

Trans-NIH Health Communications and Information Workgroup

Dr. Janet Austin provided a brief history of the trans-NIH American Indian/Alaska Native (AI/AN) Workgroup, and its collaboration with Cathy Stueckemann, National Director of the Community Health Representative (CHR) Program at the Indian Health Service. She touched upon some of the activities of the Workgroup in cooperation with the CHRs. The Workgroup has:

  • Distributed health information via quarterly mailings to the CHRs nationwide on a variety of topics including bone and eye health issues and senior physical activity. These mailings increase awareness of the availability of free, science-based health information from NIH, and reach over 1,000 CHRs.
  • Presented a workshop at the national CHR meeting in Las Vegas in July 2008 and held a facilitated discussion with the CHRs there to learn more about their interests. The Workgroup learned that many CHRs were not familiar with NIH and the vast resources available.
  • Presented a poster on the findings from the July 2008 workshop at the NIH Health Disparities Summit in December 2008.

Dr. Austin said that in turn, the NIH Workgroup has learned that the CHRs serve as health promoters, health educators, patient advocates, and liaisons with the medical community. She closed by saying that "In this time of information overload, we need to create new and lasting partnerships to reach our communities in need, and it is my hope that this workshop will be a spark to ignite a few creative and innovative collaborations."

Indian Health Service

Cathy Stueckemann then gave an overview presentation about the Indian Health Service's Community Health Representative Program. The program is authorized by the Indian Health Care Improvement Act, and includes 264 tribally contracted programs and 1600 CHRs delivering paraprofessional health and health information services.

Ms. Stueckemann listed some of the services CHRs provide:

  • Advocacy between community members and health professionals
  • Limited direct medical services
  • Culturally appropriate and accessible health education
  • Informal counseling and social support
  • Transportation for those who need health care
  • Case management and patient monitoring
  • Emergency care
  • Light homemaker services
  • Translation.

"We say we are 'High-talk/Low-tech,'" Ms. Stueckemann said, emphasizing this effective communication strategy in AI/AN communities. The CHRs look at the person as a whole, and draw upon the 16 or 17 types of services in which they are trained, as dictated by the tribal authority. "Give a CHR duct tape, and they can do anything," she reflected, emphasizing CHRs' adaptability and resourcefulness in the rural, remote communities they serve.

"We are moving from a doctor-driven to a patient-centered model of care, and the CHRs are the ears and eyes and mouth of the people," she said. "They have the opportunity to translate research to the field." CHRs are a valuable resource and can collaborate with NIH by making contact with local communities, providing information, setting up work groups, and disseminating information.

First Keynote Speaker - Alaska

Dr. Melany Cueva, the Program Coordinator for the Alaska Native Tribal Health Consortium (ANTHC), based in Anchorage, was the first keynote speaker. Her presentation, entitled "Bridging the Divide - Cancer Education for CHRs," described the culturally respectful cancer education program she developed. The goals of the program were to develop cancer education collaboratively with and for CHRs as they build their understanding of the disease, and to identify ways to strengthen communication between clinical providers and CHRs to improve cancer-related care.

Her presentation incorporated many of the participatory techniques she uses in her cancer education workshops, including breathing techniques, movement, and reading aloud. She showed a brief video showing the difficulty of overland travel in Alaska and emphasizing the vital link CHRs provide to widely scattered villages. The video highlighted the roles CHRs play when it comes to cancer education, including supporter, encourager, information provider, and listener.

From the CHRs' experiences working with communities, individual stories were collected and adapted into a theatrical piece with five characters dealing with cancer. The piece was often performed as a "reader's theater," where audience members read the characters' lines aloud. Both the content and the format of the reader's theater helped to engage people around the taboo subject of cancer and shed light on the cancer experience. In one instance, a woman diagnosed with cancer for 2 years was finally able to share the news with her family after having read aloud the part of a cancer patient as part of the reader's theater.

In bringing messages of change of habits for cancer prevention and screening to Native populations, Dr. Cueva emphasized the importance of listening and understanding. Storytelling and reader's theatre are central to her health information training, because they give words to participants for anxieties that have been difficult to talk about. She referred participants to a Web site, http://storiesforchange.net to learn more about the digital storytelling she encouraged.

Her training program also incorporates:

  • Visual arts
  • Song
  • Movement and dance
  • Public speaking
  • Self-care in preparation for caring for others
  • Cooking and nutritional information
  • Information about cancer screening exams
  • Indigenous perspectives for learning wellness.

Dr. Cueva said that the throughline for the workshops is the phrase "Wellness lives in the heart of the community."

Second Keynote Speaker - New Mexico

The second keynote speaker was Jean Pino, who comes from the Zia Pueblo in New Mexico. She has worked as a Community Health Representative for 25 years, and now serves as a CHR coordinator. Her presentation, entitled "Heart Health and Cancer 101," focused on two programs she has been working on. One is a collaboration with the University of New Mexico to reduce disparities in the incidence of cancer, and the other is a collaboration with the National Heart, Lung, and Blood Institute (NHLBI) on a similar health education program aimed at heart disease prevention.

The University of New Mexico is building a new Cancer Research and Treatment Center. There are barriers to care, especially to screening and early detection, in the indigenous population. These barriers include:

  • Lack of materials and programs that are culturally relevant
  • Lack of education and training opportunities
  • Differing communication styles
  • English as a second language
  • Poverty
  • Lack of transportation
  • Illness beliefs unique to AI communities.

Ms. Pino elucidated some of the cultural beliefs surrounding cancer, for instance, the belief that "If I talk about it I will bring it on to myself." There is also a certain cultural modesty that prevents people from seeking cancer screenings, and a cultural denial-"If I don't know, I won't have it."

The CHRs have been the link between the Indian Health Service and the native community. The new Cancer Treatment Center in Albuquerque will integrate western medicine and native medicine and provide a holistic approach to health and wellness.

"Strengthening the Heartbeat of American Indian and Alaska Native Communities" is the NHLBI/IHS-sponsored education program for patients that CHRs deliver to increase awareness about heart disease. Ms. Pino described the many creative ways that the healthy lifestyle curriculum is communicated, including games and cooking classes.

Panel Discussion

There was a lively Q & A session, facilitated by Cathy Stueckemann of IHS. The panel consisted of the two keynote speakers, Jean Pino and Dr. Melany Cueva, as well as three IHS Area Office Coordinators who provide consultation and technical assistance to CHR programs regionally throughout the country - Dione Harjo, assistant director of the IHS CHR program, who is based in Oklahoma; Jeannette Yazzie, who represents the IHS in the Navajo area of Arizona; and Georgia Butler who represents IHS in Phoenix, Arizona.

Most of the questions centered around ways to make materials culturally sensitive and tailored for AI/AN people given the diversity of traditions, cultures, and sometimes languages among the more than 500 Federally-recognized tribes. Jean Pino said that if something is designed for indigenous people in the Portland area, with whale and canoe images, it won't apply to Pueblos, who identify with drums and pottery. Jeannette Yazzie suggested using pictures of nature and of people, but not in traditional dress, as that will vary.

Dione Harjo recommended a "Culture Card" published through a cooperation of the Substance Abuse and Mental Health Services Administration (SAMHSA), the Centers for Disease Control and Prevention (CDC), the Indian Health Service, and the Centers for Medicare & Medicaid Services (CMS) entitled "A Guide to Build Cultural Awareness." It is available through SAMHSA's Web site (http://www.samhsa.gov/SAMHSAnewsLetter/Volume_17_Number_2/AmericanIndianCulture.aspx).

The final questioner asked if there were some common mistakes that well-meaning non-Natives might make. Dr. Cueva answered this question, as she is a non-Native who has worked for many years with indigenous communities. The best advice, she said, is to keep quiet until one has spent time listening. She has found that the best messaging consists of having people share their stories and connect at the heart level. One person's story leads to another person's story, and that leads to understanding.

After the meeting adjourned, the out-of-town guests had a tour of the National Library of Medicine. This workshop was recorded and is available to view online in the NIH videocast archive at http://videocast.nih.gov/PastEvents.asp.