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Community Outreach

Health Partnership Program: Progress, Opportunities, And Challenges
Summary Points from Presentations and Group Discussions

February 25-26, 2002 (historical)

Partnership Issues

What has NIAMS already done to increase the level of trust between NIAMS and its community partners?
  • Coming to the inner city frequently to discuss the HPP project with community representatives and organizations.
  • Listening to these individuals to better understand the community's health care needs and how they can be addressed.
  • Selecting an established facility for the CHC that is trusted by the community and easily accessible (its location at a Metro station is ideal).
  • Creating an attractive and comfortable clinic in a limited amount of space.
  • Focusing on the two groups that are the most underserved (Hispanics/Latinos and African Americans) and understanding the diversity within each group.
  • Initiating contact with organizations that represent these groups and treating them as real partners.
  • Assuring that the NIAMS clinical staff involved are caring people who respect the residents of the community and understand their cultures.
  • Ensuring that the clinic is run effectively by competent staff.
  • Figuring out how to address language and literacy problems (e.g., hiring bilingual staff, using a translation telephone service, minimizing paperwork, asking intake questions orally).
  • Providing a free service, recognizing that the uninsured in DC are unable to pay for clinic visits and medications.
  • Assuring patients that they will not be asked about their immigration status or social security number.
  • Assuring the community that identifying patient information will not be bought, sold, or shared.
  • Assuring the community that the HPP is a long term project.
How can we tell if the level of trust is increasing?
  • Consider analyzing the level of trust between NIAMS and its community partners using an analog scale.
  • Ask CHC patients specific questions that indicate their level of trust (e.g., Would you come back to the clinic if the doctor recommends it? Would you feel comfortable recommending the clinic to a relative?) and track over time the percent of patients who respond favorably.
  • Consider more indirect ways to measure trust, including tracking the percent of patients who return to the clinic, the percent who agree to enroll in clinical studies, and the number of requests for speaking engagements.
  • Have clinic staff assess trust during telephone calls (e.g., routine followup calls to CHC patients).
  • Use "free listing," an anthropology technique involving free association, to better understand what NIAMS community partners think about NIAMS and the HPP [ref. Dr. Lawren Daltroy, Brigham and Women's Hospital].
  • Hand out postcards at each clinic visit that allow patients to provide feedback anonymously.
Should NIAMS form more partnerships?

There was a strong consensus that the HPP should be expanded to include more partnerships. The following groups were recommended as potential partners:

Health-related groups

  • Local physicians, including family physicians and rheumatologists who could refer patients to the CHC (especially those practicing in Southeast Washington and East of the River.
  • DC Medical Society
  • Black Nurses Association
  • Visiting Nurses Association
  • DC Department of Health
  • Other public health organizations
  • Clinics associated with Howard University
  • Other public health clinics in DC, including those serving the homeless
  • Nursing homes
  • Meals on Wheels

Faith-based groups

  • Local churches (definitely focus on expanding this group). Ministers could be asked to identify a contact person "who really gets things done" at their church.
  • National Council of Churches
  • The Downtown Cluster (a group of DC congregations active in the community)
  • Parish nurses
  • Pastors' organizations
  • The Jewish Council on Aging

Educational groups

  • Schools at all levels (K through 12)
  • DC colleges, especially community colleges and Howard University
  • Local PTA groups

Other groups

  • National Center on Minority Health and Health Disparities, NIH
  • NFL Players Association (which sponsors an arthritis program)
  • AARP
  • Other local organizations and agencies serving the elderly
  • Advisory Neighborhood Committees (ANCs)
  • Local housing units (especially low-income units)
  • YMCA and YWCA
  • Minority sororities and fraternities (e.g., Chi Eta Phi)
  • Local soup kitchens
  • Deaf community members
  • CHC patients themselves (e.g., a patient advisory group could be formed.)
How can current partnerships be improved?
  • Categorize community partners by function.
  • Prioritize the partnerships if possible.
  • Develop a solid relationship with a contact person within each organization.
  • Allow partner organizations to get more credit (e.g., use the organizations' logos on HPP announcements).
  • Design and conduct an enhanced needs assessment to understand partners' current needs.
  • Have more frequent partnership meetings with all HPP partners or specific subgroups.
  • Increase the use of e-mail and other means of communication, keeping the messages short.
  • Use the HPP Web site (or links to other Web sites) to communicate more frequently with partners, including information on ways to encourage earlier diagnosis and treatment for individuals with arthritis and other rheumatic diseases.
  • Try to get all of the key opinion leaders in the community involved in the HPP. Ask HPP partners to identify individuals that community residents would go to for advice about health problems, and then ask these individuals the same question. Focus on the leaders who are mentioned more than once [ref. Dr. Oretta Mae Todd, Arthritis Foundation].
  • Make sure all of the key stakeholders are involved as early as possible, including those who could obstruct the project.
  • Discuss with partners the different evolutionary phases that the HPP may experience (e.g., the pilot, model, prototype, and institutionalized phases mentioned by Dr. Mattew Liang, Harvard Medical School). Try to identify community leaders who enjoy the process, not just better outcomes, since they are more likely to stay involved.

Public Health Education

In what ways can health information be packaged?
  • Develop a prepared announcement for publication in church newsletters and distribution to different types of community media.
  • Ask students (particularly local college students) and other youth groups to develop ads for the HPP.
  • Work with other public health clinics and nursing homes to educate patients and staff about rheumatic diseases and the CHC.
  • Ask community organizations serving the elderly (Meals on Wheels, local soup kitchens, emergency rooms) to help distribute HPP information, integrating it into their own activities.
  • Give partners a list of ways they could integrate HPP information into their groups' activities.
  • Distribute brochures and other printed materials (as well as re-order forms) to churches, clinics, community centers sponsoring exercise programs, and other locations recommended by HPP partners.
  • Distribute HPP information in nontraditional places, such as laundromats, beauty salons (hair and nail salons), and barber shops.
  • Consider using the Arthritis Foundation's six-week course to train community leaders to help educate the community about arthritis; course materials should include information about the CHC as well as a list of local rheumatologists.
  • When preparing materials in Spanish or a different language, write them initially in that language rather than translating documents written in English.
  • When preparing media messages in Spanish, use "broadcast Spanish" (the standard used for radio and television media).
What factors should be considered when using different types of communication and distribution channels?
  • Identify your target audience (the group you want to address) and make sure your timing is appropriate for this audience.
  • Pay special attention to the primary language and literacy/reading level of your audience (e.g., use of idioms, percent of nonreaders).
  • Definitely use radio as a primary channel, especially during the workday.
  • Also use print media and television (if funds permit).
  • Carefully consider the gender and accent of the speaker.
  • Use billboards.
  • Use channels that permit free advertising (e.g., buses, the Metro, public service announcements on the radio).
  • Use the CHC waiting room as a distribution channel for health information.
  • Get advice from faculty and students enrolled in marketing and graphic design programs at local colleges.
  • Use celebrities if possible.
In addition to conducting health education activities, how can the HPP promote earlier diagnosis and treatment of rheumatic diseases in the community?
  • Use the CHC to educate health professionals, emphasizing that arthritis is not a minor problem for many patients.
  • Review the National Arthritis Action Plan (NAAP) for information on the disease distribution in different populations, communication and education strategies, and information on arthritis programs, policies, and systems [ref. Dr. Leigh Callahan, University of North Carolina].
  • Conduct a literature review and sponsor studies on how arthritis and other rheumatic diseases affect people's roles (for example, arthritic women in Boston sought treatment earlier than men because it had a greater impact on their role within the family).
  • Encourage college master's degree students to study these issues, as well as doctoral students in social work and nursing.
  • Issue Requests for Applications (RFAs) to encourage researchers to develop instruments to measure treatment effects and investigate community-based strategies for encouraging earlier diagnosis and treatment of rheumatic diseases.

Patient Care

Do you have any suggestions for improving the Community Health Center?
  • Determine the clinic's capacity in terms of patient load and plan how to handle a large influx of patients in the near future. Be prepared for this situation since all the factors for a successful practice are present: ideal location, low cost to patients, and serving an unmet need.
  • Consider alternatives to NIH's standard clinic intake process, which takes a long time to complete.
  • Estimate the annual cost of providing the latest medications to uninsured patients and consider developing guidelines to stay within budget.
  • For Medicaid patients, determine how their medication costs can be covered by Medicaid.
  • Encourage DC rheumatologists in private practice to treat uninsured patients.
  • Consider alternatives to shuttling two-thirds of CHC patients to the NIH Clinical Center for x rays.
  • Consider using telephone intervention rather than a followup visit with a physician in certain cases [ref. Dr. Kate Lorig, Stanford University].
  • Consider conducting "group visits" where patients meet in a group to discuss their problems with a physician and nurse; private patient exams can be done after the group session [ref. Kate Lorig, Stanford University].
  • Consider broadening the CHC health care team to include medical and health-related professionals, with a rheumatologist serving as the team leader. This model of care is likely to be more cost-effective [ref. Dr. Matthew Liang, Harvard Medical School].
  • Give patients options for providing information to clinic staff. For example, consider allowing patients to take home and mail back questionnaires that need to be completed so they can leave the clinic earlier and have their family help them answer the questionnaire.
  • Consider offering a self-efficacy program for arthritis patients (perhaps modeled after Dr. Kate Lorig's generic self-help program). The program could focus on the key information patients need to know to manage their arthritis, using group processes, skills mastery, and action plans to change behavior.
  • Review the Health Resources and Services Administration's Health Disparities Collaborative project which is being conducted with the Institute for Healthcare Improvement (IHI); their model involves using teams of clinical and administrative staff to improve patients' self-management skills.
  • Be flexible in scheduling patient programs at the CHC (e.g., Saturday morning, Sunday afternoon, and evening programs may be best).
  • Learn the key values of different cultures and incorporate them in clinic procedures [ref. Dr. Kate Lorig, Stanford University].
  • To improve the clinic, talk as much as possible to patients and HPP partners who understand different cultures and listen to their recommendations.

Access To Clinical Investigations

Do you have recommendations for future community-based research studies?
  • Encourage both community-initiated and investigator-initiated studies.
  • Ask HPP partners and patients what they think should be studied (i.e., what they want to learn more about).
  • Design studies that focus on the more prevalent rheumatic diseases (e.g., arthritis rather than lupus).
  • Ask HPP partners to play a key role in recruiting patients for HPP research studies, using the CHC to help with the recruitment process.
  • Avoid certain language, such as "recruiting subjects for clinical trials," "experimental drugs," and "placebos." For example, use "participant" instead of "human subject." By being willing to fight IRB battles on the use of these terms, NIAMS will gain the respect of the community.
  • Form a patient council or community advisory group (with IRB-like functions) to advise on administrative issues involving the CHC and review new proposals for research studies, including proposed consent forms. This group would not replace the official Institutional Review Board.
  • Provide a process for researchers who have advised the HPP to have an opportunity to collaborate on HPP research studies in their areas of expertise.
  • Conduct a literature review of research studies on arthritis and other rheumatic diseases, especially community-based studies involving minority populations and the use of complementary/alternative medicine.
  • Conduct a needs assessment to better understand how clinical research is perceived by the patient community (e.g., a common fear of being a "guinea pig"), how their concerns could be addressed, and which recruitment strategies are likely to be most effective (for example, many patients may be motivated by the idea of helping others).
  • Seek advice from HPP partners and patients on the best ways to collect patient data, including the type of person who should obtain information from patients. Focus groups may be especially useful in identifying strategies for collecting data on complementary and alternative medicine practices [ref. Dr. Leigh Callahan, University of North Carolina].
  • Consider involving an anthropologist to study cultural differences.
  • Develop a process that encourages patients to participate in clinical trials but does not pressure them to do so. They need to feel in control of the decision.
  • Talk with private-practice rheumatologists who have enrolled minority patients in clinical trials and ask them to share their experiences [ref. Dr. Nigel Harris, Morehouse School of Medicine].
  • Develop informed consent documents that can be clearly understood by the patient population and be concrete in explaining to patients how their confidentiality will be maintained. For example, consider using sidebars to highlight key points in the consent form [ref. Dr. Lawren Daltroy, Brigham and Women's Hospital and Dr. Kate Lorig, Stanford University].
  • Ask patients and HPP partners to review draft consent forms and explain what they think each paragraph means. Tape-record these sessions and use them to improve consent forms.
  • Consider conducting feasibility studies to see if proposed interventions are actually possible with the CHC population and the small clinic setting.
  • Reassess all CHC patients at standard intervals (e.g., at 6 months, 1 year, and 2 years after their initial visit or intervention). Be sure to get adequate information on how to contact them in the future.
  • Whenever possible, encourage researchers to use instruments that have been shown to be reliable and valid with similar populations. For example, consider using Dr. Kate Lorig's instrument (which includes self-efficacy scales) or the Health Assessment Questionnaire (HAQ). Dr. Richard Maisiak, University of Alabama, has found that the HAQ may need to be modified for certain populations.
  • Consider using incentives to encourage enrollment and/or questionnaire completion (e.g., paying patients $15-20 after completing a pretest, after completing a posttest, and 6 months later).

Recruitment To Research Careers

In what ways can minorities be encouraged to pursue careers involving rheumatic diseases?
  • Develop an HPP "pipeline" program with different career tracks to encourage minorities at all levels of education to pursue health-related and research-related careers.
  • Include a variety of careers, such as allied health professionals (physical therapists, dietitians), as well as physicians, nurses, and biostatisticians.
  • Increase the visibility of minority scientists and health professions in the community (e.g., through radio shows aimed at minority communities, minority colleges, churches, social organizations).
  • Consider using the slogans: "Look in the mirror. That's what a scientist looks like" and "There's a job for everyone in medical research."
  • Promote the idea that scientists are "cool" (e.g., develop and distribute a poster with a rheumatologist researcher investigating an athlete's knee).
  • In promoting scientific careers, try to communicate the passion and self-confidence of successful researchers.
  • Talk to directors of rheumatology fellowship programs about how they got into the field and ask them to encourage minorities in internal medicine residencies to become rheumatologists.
  • Invite minority medical students to the CHC and give them opportunities to work on rheumatology projects involving patients and the community.
  • Identify "best practices" for recruiting minorities to health careers and fostering career development (e.g., contact Dr. Moses Williams at Temple University to learn about his longitudinal "distance learning" study in Philadelphia, which provides students at different stages of the pipeline with mentoring, lab work, and clinical contact). Also assess the outcomes of different recruitment strategies.
  • Conduct a literature review to determine trends in the number of minorities pursuing research careers and the number who become rheumatologists, identifying major barriers and incentives.
  • Use NIAMS curriculum supplements to spark interest among K-12 students in careers involving rheumatic diseases.
  • Develop summer research programs for high school students.
  • Distribute to local schools some of the videos produced by the NIH Office of Science Education, such as "Women in Science" video.
  • Promote the Web-based live chat sessions sponsored by the NIH Office of Science Education in which students can ask researchers questions about pursuing careers involving rheumatic diseases.
  • Arrange for NIH scientists to visit the CHC.
  • Recruit individuals to be mentors and role models for students at different stages of the pipeline, working with HPP partners; NIAMS fellows working at the CHC could serve as mentors, but there should be funding provided for mentoring.
  • Ask local high schools, colleges, and the community to identify students at all levels who might be interested in participating in research projects at the CHC. Use these projects and mentors at the CHC to get the students "hooked" on research.
  • Allow high school students to do voluntary community service projects at the CHC, getting the DC Department of Health involved if possible.
  • Work with the National Area Health Education Center (AHEC) and its network of local AHECs and Health Education Training Centers (HETCs), which are community-based programs working with community and academic partners to address the health workforce needs and disease prevention information needs of medically underserved communities.
  • Keep track of the number of students who have been contacted and who have been successfully recruited into health-related and research-related careers.

Strategic Planning And Evaluation

Should any items in the Conceptual Framework be revised?
  • Consider dropping Intermediate Goal #1 (Higher degree of trust established between NIAMS and its community partners) because it is too hard to measure trust directly.
  • Consider adding the long-term goal: Improved attitude of NIH scientists toward community-based research.
  • Consider adding the long-term goal: More patients attending the Community Health Center (Note: This goal is similar to Intermediate Goal #4)
  • Consider developing a more user-friendly conceptual framework and changing its name. The current approach seems too academic.
How can we measure our progress toward achieving increased community awareness of rheumatic diseases, the CHC, and other NIAMS resources (Long-Term Goal #1 of the Conceptual Framework)?
  • Use telephone and personal interviews, polling non-CHC patients at the Upper Cardozo Health Center, patients and staff at other clinics, and community residents being served in beauty salons, barber shops, etc.
How can we measure our progress toward achieving earlier diagnosis and treatment of rheumatic diseases in the community (Long-Term Goal #2 of the Conceptual Framework)?
  • To assess NIH's impact on health disparities, collect patient information on system-based factors (e.g., insurance status, other measures of access to care) as well as biologically based factors.
  • Review Healthy People 2010 statistics on arthritis in order to improve understanding of current health disparities and ensure that the same data are collected on CHC patients so that CHC statistics can be compared to national averages.
  • Stay in contact with the National Center for Health Statistics (NCHS) to know which Behavior Risk Factor Surveillance Survey (BRFSS) questions (and other questions) on arthritis and other rheumatic conditions are being considered for national NCHS surveys.
  • Compare CHC patients with other patients in the U.S. who have answered the same BRFSS questions [ref. Dr. Leigh Callahan, University of North Carolina].
  • Ask CHC patients how long they have had arthritis and track the data through time to see if patients are presenting earlier in the course of their disease.
  • Compare the average time-to-initial-treatment for CHC patients with averages reported in the literature for similar types of patients.
  • Consider comparing CHC patients with similar patients at other DC clinics, at least in terms of demographics.
  • Compare the self-rated behavior of CHC patients attending a self-efficacy program with a control group, such as patients on the waiting list [ref. Dr. Kate Lorig, Stanford University].
  • In identifying comparison groups, consider the advantages and disadvantages of using historical standards, theoretical standards, and normative standards [ref. Dr. Lawren Daltroy, Brigham and Women's Hospital].