Data sovereignty and disaggregation research to be featured at State Capitol
Data disaggregation and data sovereignty are foundations for increasing racial, ethnic and gender equity. They ensure that state spending is adequate and appropriately allocated, and that revenues are assessed and collected fairly. This topic will be the focus of an upcoming brief on data justice, which will present policy solutions to improve our state’s data collection and use.
On January 14, 2021, the Hawaiʻi Budget & Policy Center (HBPC) will present the report’s findings at a joint briefing by the Senate Committee on Hawaiian Affairs and the House Committee on the Judiciary and Hawaiian Affairs.
“Data disaggregation” means to collect and use data that differentiates characteristics such as ethnicity, age, gender, income, geographic area or other particulars. Imagine how unhelpful information collected on race and ethnicity in Hawaiʻi would be if it lumped all Asians, Native Hawaiians, and Pacific Islanders together. We know that these groups can have some very dissimilar characteristics because of cultural, social, economic and physical differences.
Yet, national data typically combines them and some state programs in Hawaiʻi do too. In fact, early in the COVID-19 pandemic the state combined information about Native Hawaiian and Pacific Islander disease incidence, which disguised the much higher rate of infection for Pacific Islander populations. This, in turn, delayed the state in taking action to include the most affected communities in outreach and prevention activities.
“Data sovereignty” refers to indigenous peoples’ right to reclaim the purpose and value of data that is collected, analyzed and used by and for their communities. Within the dominant western deficiency approach, data often focuses on disparities and damaged people. Native Hawaiians, among others, need to be at the table to determine how data can document their true wellbeing, illustrate their many strengths and successes, and be used to invest public resources in effective services and supports.
HBPC started its work on data disaggregation and sovereignty in 2019 through a new partnership with Papa Ola Lōkahi, an organization committed to the optimal health and wellbeing of Native Hawaiians and their families. Papa Ola Lōkahi does its work through public policy and strategic partnerships. It has key responsibilities under the federal Native Hawaiian Health Care Improvement Act and Hawaiʻi Revised Statutes, which include implementing a master plan for Hawaiian health, improving access to healthcare by developing a culturally competent health workforce, and supporting traditional Hawaiian healing practitioners.
Initially, our shared goal was to assess the investment that the State of Hawaiʻi makes in its Native Hawaiian citizens. However, it quickly became clear that budget and program data about services and supports for Native Hawaiians were inadequate to allow us to make such an assessment. Our work together instead began to focus on how our public programs can ensure that they are effective in addressing the greatest needs and achieving the best results for Native Hawaiians.
To be sure, Papa Ola Lōkahi already has a long history of expertise and advocacy for disaggregating data about Native Hawaiians and Pacific Islanders in the census and in national programs. The Office of Hawaiian Affairs, too, has been a leader in promoting policy and practice to standardize the collection of disaggregated data for all state programs.
Standing on their shoulders, our brief identifies the essential first steps as:
Data Disaggregation. Collect and release detailed data that differentiates characteristics such as race and ethnicity, especially disaggregation of Native Hawaiians and Pacific Islanders from Asian and “mixed race” categories.
Data Self-Determination, or Sovereignty. Include Native Hawaiians and other priority populations in decision-making processes to determine what kinds of data should be collected, how programs will collect it, and how the data should be used. This approach is also called “data sovereignty.”
Consultation. Involve Native Hawaiians at every stage of program design and implementation, promoting enhanced communication that emphasizes trust, respect and shared responsibility.
The joint legislative briefing will feature a summary of findings from Lilinoe Kauahikaua, co-author of HBPC’s brief. Lilinoe is a graduate student in the Myron B. Thompson School of Social Work at the University of Hawaiʻi at Mānoa. Her research includes details on how various state programs currently collect and use data. as well as best practices that should be adopted.
This will be followed by a panel that includes Sheri Daniels from Papa Ola Lōkahi discussing why collecting and using data effectively and ethically is the foundation to improving Native Hawaiian health and wellbeing. The panel will be facilitated by Seanna Pieper-Jordan, director of the Hawaiʻi Appleseed Native Hawaiian Equity Initiative. Panelists will outline the steps needed to get from current ineffective data collection and use practices to a system that best serves Hawaiʻi’s people and public programs.