Policy, Research, Analysis and Consultation

Racial, Ethnic, and Primary Language Data Collection in the Health Care System: An Assessment of Federal Policies and Practices.

SHIRE’s seminal report on this topic, published in September 2001 by The Commonwealth Fund, has been widely cited as a resource for decision-makers within and outside government agencies. The Institute of Medicine prominently featured the report and its recommendations in its hallmark Unequal Treatment report issued in 2002. A key finding is the fact that Title VI of the Civil Rights Act of 1964 provides clear justification for the collection and reporting of racial, ethnic and primary language health data. The report also confirms the critical need for these data if the national goal of eliminating health disparities will be achieved. SHIRE and its partner, the National Health Law Program analyzed federal policies, practices and perspectives over 12 months. The Commonwealth Fund indicates that this report is one of the most frequently requested publications.

Giving Voice to the Voiceless/Language Barriers and Health Access Issues of Black Immigrants of African Descent – A Preliminary Assessment

The California Endowment engaged SHIRE to identify language and cultural issues that impede access to health care among immigrants of African descent in California. SHIRE examined in detail census data on African immigrants in the state, and also conducted qualitative research in San Diego and Los Angeles, including surveys, focus groups, random interviews and consultations with knowledgeable observers of immigrant populations. Key findings point to formidable barriers to health care faced by these immigrants, which are exacerbated by the lack of cultural competency of health care providers. Recommendations include the improvement of data collection efforts, as well as strategies to strengthen and increase utilization of community-based organizations which represent and serve these communities. Publication of this report is scheduled for early 2005.

Racial and Ethnic Health Disparities

Out of Many, One: A Multicultural National Campaign to Eliminate Racial and Ethnic Disparities in Health
Since 1999, SHIRE has coordinated this first ever national advocacy coalition led by people of color and dedicated to achieve health parity for the five major racial and ethnic minority groups in the nation. Notable Out of Many, One (OMO) accomplishments are a precedent-setting national conference (November 2000) where participants developed a widely-distributed strategic plan for achieving health parity by 2010; production of cultural celebrations and conduct of workshops for the 2002 National Summit on Health Disparities sponsored by the Office of Minority Health (OMH), HHS; leadership of advocacy, policy and program initiatives at OMH and the Centers for Medicare and Medicaid Services; numerous presentations and workshops on coalition-building and health disparities at national, regional and local conferences; and working management and steering committees in which each racial/ethnic group is equally represented. Support for these efforts has come from the Office of Minority Health, the Ford Foundation, and for 2004-2005, from The California Endowment. Details are available at www.outofmany1.org.

Strengthening the Informed Consent Process to Address Racial and Ethnic Health Disparities

SHIRE has provided major support to the Department of Human Services and Office of Minority Health, for the investigation of the relationship between trust and racial/ethnic health disparities, contributing factors to that dynamic and the efficacy of informed consent and other strategies to reduce and ultimately eliminate disparities in health experienced by minorities. Study premises reflected the awareness that trust, distrust and trustworthiness continue to have a negative impact on public health outreach, clinical trials and other forms of research, as well as on health care access and treatment. Data gathering activities included an environmental scan, interview with key informants, an extensive literature review, completion of analytical briefs, an expert panel meeting and a national conference held at Tuskegee University in June 2004. Publication of the final report is expected in early 2005.

National Policy Agenda: Eliminating Health Disparities in Communities of Color

With major support from The Commonwealth Fund, SHIRE is implementing a two-phased project to create a national policy framework and to promote implementation of racial and ethnic health parity initiatives. In April 2004, SHIRE published the National Policy Agenda, which was the outcome of a Multicultural Leadership Forum convened by the Fund and SHIRE earlier in the year. This agenda was widely distributed, by the American Public Health Association, Out of Many, One, the California Pan-Ethnic Network and other organizations, as a guide to develop and assess policies and programs. National policy-makers, in the executive and legislative branches of government, have also been introduced to the agenda. In early 2005, SHIRE will collaborate with The Commonwealth Fund and elected officials in sponsoring a briefing on national policies to eliminate health disparities, and will produce a final report detailing ways in which the National Policy Agenda and other project deliverables have been used.