The consequences of not having accurate data can lead to culturally inappropriate interventions, and, as a result, poor health outcomes.  – Dr. Connie Nguyen-Truong, Ph.D., RN, PCCN, Oregon

As a nurse and scientist, Dr. Nguyen-Truong seeks to understand both the medical and environmental conditions her patients face. Yet too often, there is little research she can review to help make the best decisions for the communities she serves. The lack of data and research makes it extraordinarily difficult to provide culturally competent care that can address the real health disparities that exist. 

Last summer, advocates in Oregon celebrated a victory and a potential solution to Dr. Nguyen-Truong’s problem as Governor Kitzhaber signed House Bill 2134 (data equity legislation) into law. The law establishes uniform and culturally competent standards for collecting data on race, ethnicity, preferred languages, and disability status in surveys and reports, including those the Oregon Health Authority or the state Department of Human Services compiles. The law has potential to improve health equity in Oregon through helping to record culturally competent data that provides a better understanding of disparities facing communities of color, immigrants and refugees. In addition, the legislation creates accountability to communities by requiring regular public reports on data collection practices, establishing a stakeholder advisory group, and ensuring that data collection standards are updated every two years to conform to local and national best practices.

The Asian Pacific American Network of Oregon (APANO) and the HOPE Coalition formed the Data Equity Legislative Coalition, which introduced House Bill 2134 after a review of Oregon’s current data collection policies revealed deep inconsistencies and significant gaps that were insufficient to support the needs of Oregon’s diverse communities. For example, Asians and Pacific Islanders are often grouped into a single category in public health reporting. This masks the unique needs of those communities and undermines effective interventions to serve Oregon’s 212,000 Asian Pacific Islanders who come from 60 unique ethnic origins and speak more than 100 different languages. The lack of detail in data collection leads to inaccurate data and deficient policies that are often costly. Through smart and consistent data collection, we can ensure all communities in Oregon experiencing health disparities are better served by our health institutions. 

The Data Equity Legislative Coalition—comprised of a diverse set of business, issue, and advocacy groups in support of racial equity—had a vision of health equity and prosperity for all communities when they wrote and introduced the data equity legislation. The basic policy concept had been vetted for more than 10 years by public and private efforts to improve health equity, including a Governor’s Health Disparities Task Force.

As we built support for and worked to pass the bill, there were several key strategies and activities that helped us move the work forward:

  • Messaging and Communications: The coalition created a clear and disciplined message platform that was reinforced by coalition leadership and staff. Our efforts were supported through professional polling and message development donated by a local foundation.
  • Coalition and Stakeholder Alliances: Coalition members participated in the Oregon Health Authority’s Health Equity Policy Committee to build strategic alliances and foster close relationships with agency leadership, government affairs and the offices of equity and inclusion.
  • Campaign Planning and Development:  We developed a strong campaign plan, detailing decision-making, our legislative strategy, and grassroots organizing, that was adopted in the months before the 2013 legislative session started. Policymaker Education: Although Oregon has a consumer-friendly health policy environment and a robust health advocacy community, one of the most significant barriers we had to overcome was a lack of awareness among legislators and policymakers about the needs of communities of color in Oregon. This was addressed in part through the initiative of new health equity offices at the local and state level which published periodic reports on the State of Health Equity. In addition, the Data Equity Coalition provided public testimony, contributed to policy research and analysis, and garnered public support from communities directly affected by health disparities to help raise awareness about health equity issues. 

The campaign resulted in more than 40 endorsements from organizations across Oregon, overwhelming support for the bill in the House and the Senate, and Governor Kitzhaber’s signature transforming HB2134 into law.

Looking ahead, the Oregon Health Authority will be convening a broad stakeholder community to develop the administrative rules for the data equity legislation. The Data Equity Coalition will be well represented, and will ensure the consumer and community voice is heard throughout the process. We expect to have final rules adopted by Spring 2014, and the report back requirements in the bill will ensure a public hearing by June 2014 at which point we will also have a clearer understanding of the implementation plan. The data equity legislation represents groundbreaking change for Oregon that will reshape the health and human service environment to better serve all our communities.

— Reverend Joseph Santos-Lyons, Executive Director, Asian Pacific American Network of Oregon and
Victoria Demchak, former Policy Coordinator, Asian Pacific American Network of Oregon