| Literature DB >> 34007882 |
Amy L Hawn Nelson1, Sharon Zanti1.
Abstract
INTRODUCTION: Data integration by local and state governments is undertaken for the public good to support the interconnected needs of families and communities. Though data infrastructure is a powerful tool to support equity-oriented reforms, racial equity is rarely centered or prioritized as a core goal for data integration. This raises fundamental concerns, as integrated data increasingly provide the raw materials for evaluation, research, and risk modeling. Generally, institutions have not adequately examined and acknowledged structural bias in their history, or the ways in which data reflect systemic racial inequities in the development and administration of policies and programs. Meanwhile, civic data users and the public are rarely consulted in the development and use of data systems.Entities:
Keywords: Keywords racial equity; data integration; participatory action research; public deliberation
Year: 2020 PMID: 34007882 PMCID: PMC8110889 DOI: 10.23889/ijpds.v5i1.1367
Source DB: PubMed Journal: Int J Popul Data Sci ISSN: 2399-4908
| Positive Practices | Problematic Practices |
|---|---|
| Including diverse perspectives (e.g., community members with lived experiences and agency staff who understand the data) on planning committees | Using only token “representation” in agenda-setting, question creation, governance, or IRB review |
| Building capacity for researchers, administrators, and community participants to work together on agenda-setting | Using deadlines or grant deliverables as an excuse to rush or avoid authentic community engagement |
| Researching, understanding, and disseminating history of local policies, systems, and structures involved, including past harms and future opportunities | Using only historical administrative data to describe the problem, without a clear understanding of harmful policies and a co-created plan of action to improve outcomes |
| Lifting up research needs of the community to funders; helping shape funding strategy | Accepting grant/philanthropic funding for a project that is not a community priority or need |
| Positive Practices | Problematic Practices |
|---|---|
| Adhering to data management best practices to secure data as they are collected—specifically, with carefully considered, role-based access | Assuming that programmatic staff collecting data have training in data management and data security. |
| Including agency staff and community stakeholders in defining which data should be collected or reused | Inviting only researchers to identify data needs |
| Collecting only what is necessary to your context | Failing to consider which data carry an elevated risk of causing harm if redisclosed when determining which data to collect in your context (e.g., a housing program that collects resident HIV status) |
| Strong efforts to support metadata documentation, including key dimensions of metadata such as: | Failure to clearly identify, explain, and document data integrity issues, including data that are: |
| Including qualitative stories to contextualize quantitative data | Allowing quantitative data to “speak for itself” without context or discussion |
| Positive Practices | Problematic Practices |
|---|---|
| Open Data | |
| Open data that have been identified as valuable through engagement with individuals represented within the data | Ongoing open data that is based upon problematic indexes or algorithms, with a history of discriminatory impact on communities (e.g., release of “teacher effectiveness scores” and “school report cards”) |
| Clear data release schedules and information on where to go and how to access data once they are released | Releasing data that can be re-identified (e.g., data released by small geographies may be identifiable by local residents) |
| Adhering to data management best practices for data access, including clear data destruction parameters (if applicable) following use | Assuming that data management best practices are being followed without explicit protocols and oversight in place |
| Utmost care given to de-identification and anonymization of data prior to release | Releasing data that can be re-identified (e.g., data that have not been properly anonymized or include aggregate or subgroup data without suppressing small cell sizes) |
| Accessible data request process with clear policies and procedures for submitting a request and how requests are evaluated | Unwillingness to release data, or limiting access to researchers or individuals with existing relationships |
| Clear documentation of why data are unavailable (e.g., specific statute, legislation, data quality explanation, data are not digitized, undue burden in data preparation) | Refusal to release data when release is permissible and would not pose an undue burden |
| Positive Practices | Problematic Practices |
|---|---|
| Involving diverse stakeholders in early conversations about the purpose of an algorithm prior to development and implementation | Developing and implementing algorithms for human services without stakeholder involvement or alignment across multiple agencies |
| Clearly identifying and communicating potential benefits and risks to stakeholders | Implementing an algorithm with no clear benefit to individuals included in the data |
| Human-led algorithm use (i.e., human(s) can override an algorithm at any point in the process) | Elevating algorithmic decision making over judgment of seasoned practitioners; no human involvement |
| Using “early warning” indicators to provide meaningful services and supports to clients | Using “early warning” indicators for increased surveillance, punitive action, monitoring, or “threat” amplification via a risk score |
| Positive Practices | Problematic Practices |
|---|---|
| Using participatory research to bring multiple perspectives to the interpretation of the data | Describing outcomes without examining larger systems, policies, and social conditions that contribute to disparities in outcomes (e.g., poverty, housing segregation, access to education) |
| Engaging domain experts (e.g., agency staff, caseworkers) and methods experts (e.g., data scientists, statisticians) to ensure that the data model used is appropriate to examine the research questions in local context | Applying a “one size fits all” approach to analysis (i.e., what works in one place may not be appropriate elsewhere) |
| Correlating place to outcomes (e.g., overlaying redlining | Leaving out the role of historical policies in the interpretation of findings |
| Using appropriate comparison groups to contextualize findings | Making default comparisons to White outcomes (e.g., assuming White outcomes are normative) |
| Disaggregating data and analyzing intersectional experiences (e.g., looking at race by gender) | Disregarding the individual or community context in the method of analysis and interpretation of results |
1 Redlining refers to the systematic denial of services by private businesses as well as federal and local government agencies in the U.S. based upon race and ethnic categorizations. Most well known was the practice of denying mortgage loans for homeowners in “redlined” areas [17, 18].
| Positive Practices | Problematic Practices |
|---|---|
| Developing differentiated messaging for different audiences that considers the appropriate level of detail and technical jargon, language, length, format, etc. | Using intentionally dense language with low readability, especially for non-native language learners |
| Reporting results in an actionable form to improve the lives of those represented in the data (e.g., analyzing food purchase data to identify food deserts and guide development of grocery stores) | Reporting data that are not actionable or that are intended to be punitive (e.g., analyzing food purchase data to remove recipients from other public benefit programs) |
| Acknowledging structural racism or other harms to communities that are embedded in the data | Attempting to describe individual experiences with aggregate or “whole population” data without analyzing disparate impact based on race, gender, and other intersections of identity |
| Providing clear documentation of the data analysis process along with analytic files, so that others can reproduce the results | Obscuring the analytic approach in a way that limits reproducibility |