Submission Categories: Skills Development, Resource Development

Title of Proposal: Accessing Online Information for Immigrant and Refugee Health

Date of Submission: July 16, 2001

Submitting Organization: Harborview Medical Center, 325 Ninth Avenue, Seattle, WA 98104-2499

Attn: Sheila L. Spring, Contracts Specialist, National Library of Medicine,

The mission of Harborview Medical Center (HMC) is to provide exemplary health care, teaching research, and community service. HMC’s mission populations include the medically-underserved. In Seattle that population includes many refugees and immigrants. One of our programs, Community House Calls (CHC), is a working model of cross-cultural health care in both clinic and community settings. CHC is the home of a Web-based file called "EthnoMed" that is designed to provide health and cultural information via the Web with the goal of improving communication between refugee and immigrant groups and their health care providers. EthnoMed (healthlinks.washington.edu/clinical/ethnomed) began in 1994 with the support of an NLM Integrated Advanced Information Management System (IAIMS) implementation grant.

Harborview and EthnoMed staff welcome this opportunity to work again with the National Library of Medicine on a project that addresses the health information needs of our minority communities. The proposed project, "Accessing Online Information for Immigrant and Refugee Health," intends to build upon the community partnerships that have been established through the Community House Calls and EthnoMed programs with seven refugee and immigrant communities: Ethiopian, Oromo, Somali, Tigrean, Vietnamese, Cambodian and Latino. Community House Calls, EthnoMed, the City of Seattle Department of Information Technology, and members of the target communities will work together to increase the availability and accessibility of online health information. Two people from each target group will complete a curriculum that teaches them how to use the Web as a resource for health information and how to teach others to do the same. Our project will produce online educational materials about cancer, diabetes and tuberculosis in the languages spoken by the target communities, and add new community information to the cultural and medical profiles on EthnoMed.

We thank you for reviewing this application for The Minority Consumer Health Outreach Program and look forward to hearing from you.

Objective 1: Improve 7 refugee and immigrant community groups’ knowledge of and access to the Web for finding health information.

1. Use the skills and technical knowledge of consortium members to develop the curriculum for training sessions that will include how to search for health information using publicly available databases; e.g. Medline Plus, PubMed, NOAH, library catalogs and Web search engines.
2. Provide training in how to access health information online for two members of each community group. Use a "train the trainer" approach, encouraging these trained "online health information access specialists" to train fellow community members with the same curriculum, in addition to accessing information for fellow community members.
3. Utilize three or four existing community centers and four neighborhood computer labs as training locations and health information access sites.
4. Advertise the availability of health information services at these locations, with fliers/posted announcements in the appropriate languages.

The Harborview Medical Librarian, a member of the UW Health Sciences Libraries staff, has recently completed a two-year project aimed at improving access to electronic resources for three of the seven target populations. This included purchasing and setting up computer hardware and software in three community centers, as well as providing training in basic computer skills (email, internet use, word processing) for members of the Somali, Ethiopian and Vietnamese communities. Some training in how to search for health and cultural information was completed, along with the creation of online documents supporting that training for each group. For "Accessing Online Information for Immigrant and Refugee Health" the Librarian will be a consortium member, volunteering technical support in the areas of curriculum planning and training.

The City of Seattle Department of Information Technology, also a consortium member, currently provides matching funds for minority community groups which develop computer and technological resources and related educational programs. For "Accessing Online Information for Immigrant and Refugee Health" this City department offers established partnerships with the neighborhood computer labs and access to free internet connection services.

Objective 2: Improve access to online information about cancer, diabetes and tuberculosis (TB) for seven immigrant and refugee community groups.

1. Create or identify and translate quality educational materials about TB into the languages of the target populations.
2. Create or identify and translate quality educational materials about cancer into the languages of the target populations.
3. Create or identify and translate quality educational material about diabetes into the languages of the target populations.
4. Explore the use of audio and visual presentations of material, in addition to written formats.
5. Publish new materials on EthnoMed.

Cancer, diabetes and tuberculosis are diseases that have been selected by Community House Calls as deserving special focus in their work with the target populations. Harborview’s Refugee and Immigrant Health Promotion Program, in collaboration with Seattle-King County Department of Public Health, is currently managing a comprehensive TB treatment and prevention program among high-risk target populations of newly arrived refugees and immigrants. The TB project has research and clinical components that are community-based and culturally-sensitive which may produce materials that can be used on EthnoMed. Similarly, materials have been developed through cancer and diabetes education, research and treatment among foreign-born patients in Seattle.

Objective 3: Increase communication and understanding between the seven target communities and their

providers for the improvement of cross-cultural health care.

1. With community participation, identify important cultural and medical information to be written about and published via EthnoMed.
2. Write and publish two online articles per community, developed in collaboration with each target community, for a total of 14 articles.
3. Alert health care providers at Harborview, and those who serve the target populations at area clinics, that new material is online.

New material that is intended to contribute to cross-cultural understanding is placed on EthnoMed frequently and is used by the health care community. Recent additions to the website include a presentation of the methods and evaluations of cross-cultural diabetes classes, an article discussing teff (a native Ethiopian grain), and an alert to medical providers regarding TB occurrence in East African Immigrant populations in King County. We do not always know how the information on EthnoMed is used, although user feedback gives us examples. For instance, a professor at the University of Washington School of Medicine uses EthnoMed to illustrate for his first-year students the importance of considering culture in their practice of medicine. He says that every quarter many of these students are surprised when, in a class exercise, they misdiagnose a seemingly apparent medical condition for lack of cultural considerations. EthnoMed introduces them to the critical nature of informed cross-cultural care.

"Accessing Online Information for Immigrant and Refugee Health" is a collaborative project of Harborview Medical Center’s EthnoMed and Community House Calls programs, the City of Seattle Department of Information Technology, and the following communities and the neighborhood and community center computer labs that serve them in Seattle: Ethiopian, Tigrean, Oromo, Somali, Vietnamese, Cambodian, and Latino. When funding is secured, representatives of all groups (the consortium) listed above will participate in one or more planning sessions to develop an agenda for meeting the project goals over a twelve-month period, to begin October 1, 2001 and to end September 30, 2002. The project will progress in three phases.

The first phase will involve identifying and training two health information access specialists from each community. Staff at Community House Calls, EthnoMed, and the City of Seattle Department of Information Technology will work with community members and computer lab personnel to identify potential trainees. Harborview’s Medical Librarian will assist the program coordinator in developing and delivering a comprehensive training curriculum during the first six months of the project.

The second phase of the project will involve translation and online publishing of material about cancer, diabetes, and tuberculosis in the languages of the seven groups. For the Latino population, it may be the case that Spanish-language materials on these topics already exist and may need only to be located and linked through EthnoMed. The HMC Medical Librarian, along with Harborview providers whose current research and clinical work focus on these topics, will participate with the program coordinator in the identification and selection of materials to be translated. Professional translators will be hired for this phase of the project that will be ongoing over the twelve-month period.

The third and final phase of the project will happen during the second half of the twelve-month period. During this phase, the project coordinator and health information access specialists will work together to find out what information each of the communities wants to communicate to their health care providers, and articles will be written to convey those messages via EthnoMed. Members of the planning team, including Community House Calls’ Cultural Caseworker Mediators (CCMs) – who are HMC employees and members of the target populations – may be involved with the project coordinator in community meetings and/or the development of interviews/questionnaires for information gathering. Additional medical interpreters and translators will be involved in this process, as well as volunteer writers and editors from the communities.

The second and third phases of the project address the observation that cross-cultural misunderstandings between immigrant patients and their health care providers have the potential to adversely impact health behavior. One way to avoid potentially harmful misunderstandings is to create educational materials that communicate important information from provider to patient and from patient to provider. "Accessing Online Information for Immigrant and Refugee Health" is a project that intends to facilitate and improve this kind of cross-cultural communication. For more examples of our work in this area, please visit the EthnoMed website at http://healthlinks.washington.edu/clinical/ethnomed/

All seven of the immigrant and refugee communities listed and described below are in continuous relationship with Harborview Medical Center in a variety of ways. The International Medicine Clinic serves these communities with customary patient care. The Refugee and Immigrant Health Promotion Program and Community House Calls both reach beyond the hospital and clinic settings to deliver culturally sensitive care and support in the communities. The City of Seattle Department of Information Technology also maintains partnerships with these communities through its programs of computer technology development at the community centers and neighborhood computer labs that serve these populations. Though no formal needs assessment has been implemented, all CCMs who were asked for their opinion (see attached letter) responded that their communities would benefit from this project. The HMC Medical Librarian, while working with three of the seven target communities during the course of the NNLM EthnoMed Community Outreach Project, received verbal appreciation and enthusiastic reception for the computer technology contributions that were made. It is the consensus of the consortium that "Accessing Online Information for Immigrant and Refugee Health" will be of benefit for each of the target communities by reducing the cultural and linguistic barriers involved in accessing online health information in their new environments.

1. Ethiopian: Ethiopian refugees began arriving in Seattle in the 1980’s and increased from 1989-1993. The total Ethiopian population in the greater Seattle area is estimated between 6,000-7,000 with women and children highest in number. Most of the refugees came from rural areas where they had little formal education. Those from urban areas are educated as health professionals, engineers, teachers and social workers. Unemployment and underemployment are leading problems for Seattle’s Ethiopian population. Most Ethiopian refugees live in central and south Seattle and several community organizations serve the community. Harborview has worked closely with The Ethiopian Community Mutual Association (ECMA) which offers ESL and literacy classes, referrals for employment and social services, legal advice, counseling and computer classes. Because the ECMA has a networked computer lab it will serve as a training location and access site. During the EthnoMed Community Outreach Project, members of this population received basic computer skills training which may facilitate identifying trainees. See

http://www.ecmaseattle.org/

2. Cambodian: Washington State is home to more than 13,000 Cambodians according to information compiled from DSHS health screenings for new arrivals. Many of these refugees, about 6,000, live in King County’s south Seattle neighborhoods. Most live in Seattle Public Housing. Harborview has worked closely with several Cambodian groups, including the Cambodian Girl’s Project and the Cambodian Women’s Association, on social service programs for the Cambodian community. Common acculturation issues for Cambodian refugees include lack of formal education and youth involvement in gangs. In this refugee population, as in many others, younger generations are more likely to speak English and have more computer skills than older generations. It may be a benefit that training young people to access online health information for their community may naturally facilitate healthy intergenerational activity, as older people seek out service from the youth.
3. Latino: The Seattle Latino community includes immigrants and refugees from many countries of Central and South America and Mexico. The 1990 U.S. Census shows 44,337 Latinos residing in King County, including 24,435 of Mexican descent and 19,902 from other Latino backgrounds. The largest single Latino group in King County is of Mexican origin. The large component under "Other Latino Backgrounds" is an indication of the diversity that can be found within the general category of "Latino." In Seattle, Spanish-language social services are fairly wide-spread and are expanding. The population is served by several established community organizations such as El Centro de La Raza and Casa Latina. This target group has settled throughout the city’s neighborhoods – north, central and south. As the population grows larger, with more immigrants and new births, Spanish-language materials will be in higher demand. Centrally locating online Spanish-language information about three of the major diseases affecting immigrants could greatly assist this population with informed prevention and treatment.
4. Oromo: Oromia is a province of Ethiopia which many Oromos believe is rightfully their own sovereign country. After leaving their homeland, most Oromos spent some time in refugee camps in Kenya, Sudan or Somalia. Refugee arrival in the United States began in the early 1980s and peaked between 1989-90, with the largest numbers of people settling in Seattle in 1989-93. The total population in the greater Seattle area numbers about 1,500 and is growing rapidly, mainly with new births but also with new family members immigrating from Africa. The Oromo Community Organization was founded by members of the community to help each other build new lives in Seattle, and a main focus of the Organization right now is education and job training so that Oromos can support themselves independently without

needing public assistance. The Organization, with which Harborview has worked directly, is especially interested in promoting education for its women as a way of improving the health and welfare of women, children and the community as a whole. Most of Seattle's Oromo population lives in south Seattle, but some families have also settled in Ballard, West Seattle, Kent, Redmond, and Bellevue. Most of the community comes from rural areas within Ethiopia and may have had little formal education, but many urban Oromos are well-educated and worked in nursing, teaching, or other professional fields before coming here. Oromos are working in a variety of capacities in Seattle, but unemployment and underemployment are problems for many heads of households. Concerns about unhealthy youth activities is also prevalent.

5. Somali: Since 1991, various militias have fought against one another, vying for control of Somalia. In 1991, people began leaving the country to escape the hunger, rape, and death that had become widespread. Over one million people fled to neighboring countries such as Ethiopia, Kenya, Djibouti, Yemen, and Burundi. Most stayed in large refugee camps which were established to house the Somalis. Resettlement programs have enabled families to move to Europe and the United States. Somalis in the US live predominantly in New York, Los Angeles, Washington DC, and more recently San Diego and Seattle. In the Seattle metropolitan area, the Somali community has predominantly settled in the Central Area, Rainier Beach, and SeaTac. At Harborview, interpreted visits for Somali patients has increased, so that the number of interpreted visits is second only to Spanish. Several community organizations have been established to serve Somali refugees, including Somali Community Services of Seattle which provides computer classes, after-school programs, ESL classes and parenting education. It has been observed among health care providers, including the Somali CCM and interpreters, that a patient’s religious beliefs may inhibit correct adherence to treatment or understanding of the medical experience. A trained community member who can relate information to a patient within their shared cultural context will facilitate improvement of this situation. The Somali Community Services of Seattle offers a large computer lab for training and on-site access.
6. Tigrean: The Tigrean population in Seattle may currently exceed 2,000. It is growing rapidly, mainly due to migration from other states and newborn babies. Most Tigreans come from small towns in Tigray and many had formal education, but a small number of them came from the countryside where they may have had no formal education at all. There are a substantial number of Tigreans with a higher level of education, i.e. doctors, engineers, accountants, etc. They work in different capacities around the Seattle area. Unemployment is not a major problem for this community, but that does not mean university graduates have gotten jobs in their professions. Most Seattle Tigreans came to the US during the mid 80’s escaping repression from the Soviet-backed regime of Mengstu. The Tigrean Community Association in Seattle was founded in 1989 to help members of the Tigrean community deal with social issues. The Association has an after school tutorial program for youths and counsels them on a number of issues, e.g. drug and alcohol abuse, gang-related activity, and teen pregnancy. The community also assists women with health and job issues. The Tigrean Community Association is located in the Yesler area near Harborview. It hosts social gatherings, meetings and offers a networked computer lab. Most Tigreans live in and around south Seattle, but others also live in west and north Seattle, Kirkland, Lynnwood, and Kent.
7. Vietnamese: Seattle’s Vietnamese refugee population arrived in three waves. The Vietnamese people who worked with the US government or who sympathized with the South feared for their lives once Thieu lost power. In 1975, 130,000 Vietnamese fled to the US with the collapse of the Thieu regime. They escaped with the help of the US, and were mostly young, well-educated, English-speaking, urban dwellers. The second wave of refugees was a more diverse group. It included people with differing ethnicities, nationalities, religions, and languages. As a group, these people were less educated, less literate (in Vietnamese and English), less familiar with western ways and thoughts, and more rural than those in the first wave. 455,000 refugees from SE Asia settled in the US between 1979 and 1983, with at least 500,000 fleeing between 1977 and 1979. Hoards of people attempted to escape by boat. Some spent years in internment camps prior to entering the US. Many suffered malnutrition, disease, and horrible treatment at the hands of camp guards. A third wave of refugees arrived between 1985 and 1991 and others continue to arrive in small numbers. This group includes both Vietnamese and ethnic Chinese people who were brought to the US through family reunification programs. Additionally, in 1988 and 1989, the US government negotiated the release of political detainees held in "reeducation" camps. Many people in this wave spent years in camps under devastating conditions. Rural people of the second wave, arriving after 1975, are less likely to speak languages other than Vietnamese. Some have difficulty learning to read and write a second language because, as farmers, many were not literate in their native Vietnamese. If they did learn to read and write, they seldom used these skills. Local Vietnamese-American Associations and others have established ESL programs in the Seattle community. Many of the elderly Vietnamese living in Seattle would benefit from more access to health information. As with some of the other target communities in our project, possible interactions across generations may develop as older Vietnamese seek out the assistance of younger trainees. Such a result would support a current movement among Seattle’s elderly Vietnamese population to preserve their culture by passing knowledge of language, history and traditions on to Vietnamese youth. The Vietnamese community lives primarily in South Seattle.

Involvement by members of the target communities in project planning and evaluation is a priority and is considered as important as their participation in the training sessions and creation of new online materials. It is vital that these communities accept responsibility and control for the activities that will influence their community development, so that the potential benefits of outreach projects like the one proposed will outlast a limited project timeline and external support. The "training the trainer" model of education is chosen for its sustainability component and facilitation of the communities’ increased access to health information over time.

Work among the newer refugee communities can be unpredictable, as community leadership may not be firmly established. One problem experienced in previous community outreach projects is the delay of project development due to rapidly changing leadership roles in the target groups. In such cases, more time may be required to build new relationships even after the project work has begun. Another potential problem may be lack of flexibility in meeting times and places for community members whose family and/or job situations may demand a lot of time and attention. Project success may be enhanced by community outreach workers having flexibility with their own schedules.

Phase 1: A skills and knowledge checklist will be created to measure the success of trainings. Logs kept by trainees will count and describe services that are provided to the community. Feedback forms will be completed by community members who receive training and/or use the service to access information through a trainee. These forms will document what health information was needed and the measure of success in the encounter. Did the client find out what they needed to know? What obstacles were there? What databases, search engines, or websites were most useful? Did the trainee feel confident that he/she could find the desired information? Etc.

Phase 2: A count of the number of articles translated and put on EthnoMed, plus the number of new links created will be recorded. The number of visitors to EthnoMed will be tracked. Feedback forms will be filled out by the trainees and other community members to indicate how useful the new material is, how culturally applicable, and how often accessed.

Phase 3: Community participation in the development of new educational materials will be tracked by recorded minutes of community meetings, a count of the number of new articles, and the number of community contributors.

Matrix: see attachment.

September 2002: Arrange and hold one evaluation meeting with consortium members to review outcomes of completed project.

Phase 1: Training 14 "health information access specialists"

October 2001: Program Coordinator and Medical Librarian develop the training curriculum, including skills and knowledge checklist and feedback forms. Program Coordinator begins attending formal community meetings and/or informal gatherings of community representatives, including CCM’s, in order to present the project outline and identify the trainees.

November 2001: Continue presenting project outline in the communities and identifying trainees. Begin first training series (the order of community members to be trained will be decided at the initial planning meeting.) Teach one two-hour class each week for four weeks for each community group (the schedules of trainees may determine class schedule).

November 2001 – March 2002: Finish presenting project outline in the communities and identification of trainees. Complete the four-session series of classes for all seven target populations. Create and post posters/fliers that advertise in the communities the new health information access services. Collect feedback forms monthly.

March 2002-September 2002: Check in with the "health information access specialists" every other month to collect feedback forms and observe the "train the trainers" model. Attend community meetings (formal and/or informal) to discuss project progress.

Phase 2: Creating or identifying and translating cancer, diabetes and TB education material; publish online via EthnoMed.

October 2001- September 2002: Track EthnoMed user numbers.

October 2001/ November 2001: Begin meeting with providers who are currently doing research and/or clinical applications around cancer, diabetes, and TB, to determine if there are quality, locally-developed materials that can be translated. Locate other non-local materials. Develop schedule for translation.

November 2001/December 2001: Hire translators and begin translating and web publishing as soon as possible.

February 2002 – August 2002: Collect feedback forms every other month from "health information access specialists."

September 2002: Compile feedback forms. Count number of articles translated.

Phase 3: Identify and develop new cultural and medical information materials with topic and content contributions from the target communities. Publish new materials on EthnoMed and inform providers of the availability of new information.

April 2002 – September 2002: With ideas and information gathered from the communities through feedback forms (completed during phase 1) and community meeting minutes, determine who will write articles and what they will write about. Publish new material on EthnoMed. Count the number of new articles and community contributors.

Program Coordinator: See also attached resume.

Christine Wilson, Program Coordinator, Immigrant Communities Grants Program/EthnoMed Staff. The program coordinator will be responsible for the overall management of the project "Accessing Online Information for Immigrant and Refugee Health," including:

• arranging for and managing the NLM funds and project, monitoring funds, arranging reimbursements, preparing budget, writing funding proposal, writing quarterly and final reports;
• working directly with the seven immigrant community groups and other consortium members;
• arranging for and organizing volunteer trainers and training sessions in how to access health information electronically;
• coordinating collection of cultural and health information for use on EthnoMed; and,
• arranging for the translation and online publishing of materials (focusing on cancer, TB, and diabetes) into the languages spoken by the seven immigrant community groups.

Christine Wilson is a member of HMC’s Ambulatory Care Services (ACS) Staff. ASC goals include partnering with patients to optimize health status, and developing best-demonstrated practice patterns. These goals will be reflected in the program coordinator’s job performance. In her current position she is working as a fund distributor for a health leadership award fund, earned by HMC’s International Medicine Director, Dr. Carey Jackson. The fund is serving several refugee community groups with support for small projects and operations. Dr. Jackson has been instrumental in clinical work and research with the target refugee populations. He commits to continue his mentoring role with the program coordinator throughout the project, as much of phase two will happen at HMC’s Kobe Building where Dr. Jackson oversees The Refugee and Immigrant Health Promotion Program.

Planning Team: The planning team will be responsible for project planning, once funding has been secured. The program coordinator will facilitate the planning meetings with the presentation of the proposed outline. Consortium members, including the HMC Medical Librarian, Community House Calls Advisory Board, CCMs, at least one representative of the City of Seattle Department of Information Technology, and members of EthnoMed’s staff, will participate as Planning Team Members to help set the training schedules, create feedback forms, and oversee the intended direction of the project.

HMC Medical Librarian: Ellen Howard, has just completed a two-year project funded by the National Network of Libraries of Medicine, Pacific Northwest Region, subcontracted through the University of Washington Health Sciences Library: K.K. Sherwood Branch. The project entitled "EthnoMed Community Outreach Project" successfully assisted three of the 7 populations described above with the purchase, set-up, and networking of several computers each at the Somali Community Services of Seattle, the Vietnamese Senior Association, and the Ethiopian Community Mutual Association. In addition, she worked with these groups to develop a program of basic computer skills classes and to create health information web pages with culturally specific links. The Medical Librarian will contribute her skills to this new project as a core consortium member by working with the program coordinator to develop and deliver the health information access trainings. In addition, she will work with EthnoMed staff to publish new material on the site. Visit http://depts.washington.edu/ethnomed/Final_Report.pdf to learn more about "EthnoMed Community Outreach Project".

The Community House Calls Advisory Board: This board is made up of community members from the seven target groups. As a member of the planning team, the CHC Advisory Board will contribute project support by representing the communities’interests, and by facilitating community relations between fellow consortium members and the target groups.

Cultural Caseworker Mediators: CCM’s will assist in the identification of potential "health information access specialists" and, like the CHC Advisory Board, will serve as liaisons with community leaders throughout the project. CCM’s may also provide interpretation. The role of the CCM is to work with patients from their own community, providing assistance with health care encounters as well as addressing other patient needs such as navigation of the education, insurance, and legal systems, housing and employment. Please visit http://healthlinks.washington.edu/clinical/ethnomed/hchc.html to learn more about Community House Calls and the role of CCMs in HMC’s immigrant and refugee health care.

EthnoMed Staff: Ann Marchand provides technical development and site management for EthnoMed and program support for the Refugee and Immigrant Health Promotion Program. She will collaborate with the program coordinator and other project participants as new EthnoMed material is developed and links with other health information sites are created.

City of Seattle Department of Information Technology: David Keyes, Community Technology Planner, and/or Emily Bancroft will represent the City of Seattle Department of Information Technology as Planning Team/Consortium Members. See attached letter of support and commitment.

Project planning meetings will take place at Harborview Medical Center. Health information access training sessions will take place at the following community centers that have operating computer labs: Somali Community Service Center, Tigray Community Association, Ethiopian Community Mutual Association, and (potentially) El Centro de la Raza. Additional training sessions will take place at the following neighborhood computer centers: New Holly, Rainier Vista, South Park, and Yesler Terrace. Computers will be available at the centers during the scheduled training sessions and for use by the health information access specialists to provide services and training to their communities. The use of questionnaires, interviews and/or community meetings during the third phase of the project will happen at the same neighborhood and community centers with the possible addition of the Oromo Community Organization, the Cambodian Women’s Association, and the Vietnamese Senior Association. These groups have worked closely with Community House Calls and EthnoMed staff; however they do not currently have their own computer labs at their centers.