Table 1.
Included studies and characteristics.
| Author, Year | Title | Type of Data Discussed | Distal Factors | Wider Actions to Enable Improvements in Data Collection | Data Collection Instruments, Systems, and Standardisation | Methodological Approaches to Improve Data Quality and Accuracy |
|---|---|---|---|---|---|---|
| Abouzeid, M et al. 2014 [16] | The potential for measuring ethnicity and health in a multicultural milieu—the case of type 2 diabetes in Australia | Ethnicity | ✓ | ✓ | ✓ | ✓ |
| Allen, VC et al. 2011 [17] | Issues in the Assessment of “Race” Among Latinos: Implications for Research and Policy | Ethnicity | ✓ | ✓ | ✓ | |
| Anderson, ML et al. 2018 [18] | Deaf Qualitative Health Research: Leveraging Technology to Conduct Linguistically and Sociopolitically Appropriate Methods of Inquiry | Disability | ✓ | ✓ | ||
| Andrews, RM 2011 [19] | Race and Ethnicity Reporting in Statewide Hospital Data: Progress and Future Challenges in a Key Resource for Local and State Monitoring of Health Disparities | Ethnicity | ✓ | ✓ | ✓ | |
| Azar, KMJ et al. 2012 [20] | Accuracy of Data Entry of Patient Race/Ethnicity/Ancestry and Preferred Spoken Language in an Ambulatory Care Setting | Ethnicity | ✓ | ✓ | ||
| Becker, T et al. 2021 [21] | Data Disaggregation with American Indian/Alaska Native Population Data | Ethnicity | ✓ | ✓ | ✓ | ✓ |
| Berry C et al. 2013 [22] | Moving to patient reported collection of race and ethnicity data Implementation and impact in ten hospitals | Ethnicity | ✓ | |||
| Beltran VM et al. 2011 [23] | Collection of social determinants of health measures in U.S. national surveillance systems for HIV, viral hepatitis, STDs, and TB | Infectious disease | ✓ | ✓ | ✓ | ✓ |
| Bilheimer LT et al. 2010 [24] | Data and Measurement Issues in the Analysis of Health Disparities | General | ✓ | ✓ | ✓ | ✓ |
| Block RG et al. 2020 [25] | Recommendations for improving national clinical datasets for health equity research | General | ✓ | ✓ | ✓ | |
| Blosnich JR et al. 2018 [26] | Using clinician text notes in electronic medical record data to validate transgender-related diagnosis codes | Gender | ✓ | |||
| Bozorgmehr, K et al. 2017 [16] | How Do Countries’ Health Information Systems Perform in Assessing Asylum Seekers’ Health Situation? Developing a Health Information Assessment Tool on Asylum Seekers (HIATUS) and Piloting It in Two European Countries | General | ✓ | |||
| Cahill SR et al. 2016 [27] | Inclusion of Sexual Orientation and Gender Identity in Stage 3 Meaningful Use Guidelines: A Huge Step Forward for LGBT Health | Gender | ✓ | |||
| Chakkalakal RJ et al. 2015 [28] | Standardized Data Collection Practices and the Racial/Ethnic Distribution of Hospitalized Patients | Ethnicity | ✓ | ✓ | ||
| Chen Y et al. 2018 [29] | Racial Differences in Data Quality and Completeness: Spinal Cord Injury Model Systems’ Experiences | Ethnicity | ✓ | ✓ | ||
| Clarke LC et al. 2016 [30] | Validity of Race, Ethnicity, and National Origin in Population-based Cancer Registries and Rapid Case Ascertainment Enhanced with a Spanish Surname List | Ethnicity | ✓ | |||
| Craddock L et al., 2016 [31] | Assessing race and ethnicity data quality across cancer registries and EMRs in two hospitals | Ethnicity | ✓ | ✓ | ||
| Cruz, TM 2020 [32] | Perils of data-driven equity: Safety-net care and big data’s elusive grasp on health inequality | General | ✓ | |||
| Cruz, TM 2021 [33] | Shifting Analytics within US Biomedicine: From Patient Data to the Institutional Conditions of Health Care Inequalities | General | ✓ | ✓ | ✓ | |
| Davidson E et al., 2021 [34] | Raising ethnicity recording in NHS Lothian from 3% to 90% in 3 years: processes and analysis of data from Accidents and Emergencies | Ethnicity | ✓ | ✓ | ✓ | |
| Derose, SF et al. 2013 [35] | Race and Ethnicity Data Quality and Imputation Using US Census Data in an Integrated Health System: The Kaiser Permanente Southern California Experience | Ethnicity | ✓ | ✓ | ||
| Donald C and Ehrenfeld JM 2015 [36] | The Opportunity for Medical Systems to Reduce Health Disparities Among Lesbian, Gay, Bisexual, Transgender and Intersex Patients | Gender | ✓ | ✓ | ✓ | |
| Escarce, J et al. 2011 [37] | Collection Of Race and Ethnicity Data By Health Plans Has Grown Substantially, But Opportunities Remain To Expand Efforts | Ethnicity | ✓ | ✓ | ✓ | |
| Fortune, N et al. 2020 [38] | The Disability and Wellbeing Monitoring Framework: data, data gaps, and policy implications | Disability | ✓ | ✓ | ✓ | ✓ |
| Frank, J and Haw S 2011 [39] | Best Practice Guidelines for Monitoring Socioeconomic Inequalities in Health Status: Lessons from Scotland | Gender | ✓ | ✓ | ✓ | |
| Fremont, A et al. 2016 [40] | When Race/Ethnicity Data Are Lacking: Using Advanced Indirect Estimation Methods to Measure Disparities | Ethnicity | ✓ | |||
| Haas, AP et al. 2015 [41] | Collecting Sexual Orientation and Gender Identity Data in Suicide and Other Violent Deaths: A Step Towards Identifying and Addressing LGBT Mortality Disparities | Gender | ✓ | |||
| Hannigan, A et al. 2019 [42] | Ethnicity recording in health and social care data collections in Ireland: where and how is it measured and what is it used for? | Ethnicity | ✓ | ✓ | ✓ | |
| Jorgensen S et al., 2010 [43] | Responses of Massachusetts hospitals to a state mandate to collect race, ethnicity and language data from patients: a qualitative study | Ethnicity | ✓ | ✓ | ✓ | |
| Khunti, K et al. 2021 [44] | The need for improved collection and coding of ethnicity in health research | Ethnicity | ✓ | |||
| Knox et al. 2019 [45] | The challenge of using routinely collected data to compare hospital admission rates by ethnic group: a demonstration project in Scotland | Ethnicity | ✓ | ✓ | ||
| Liu, L et al. 2011 [46] | Challenges in Identifying Native Hawaiians and Pacific Islanders in Population-Based Cancer Registries in the U.S. | Ethnicity | ✓ | |||
| Mathur et al., 2013 [47] | Completeness and usability of ethnicity data in UK-based primary care and hospital databases | Ethnicity | ✓ | ✓ | ||
| Pinto, AD et al. 2016 [48] | Building a Foundation to Reduce Health Inequities: Routine Collection of Sociodemographic Data in Primary Care | General | ✓ | ✓ | ||
| Polubriaginof, FCG et al. 2019 [49] | Challenges with quality of race and ethnicity data in observational databases | Ethnicity | ✓ | ✓ | ||
| Ryan et al. 2012 [50] | Use of name recognition software, census data and multiple imputation to predict missing data on ethnicity: application to cancer registry records | Ethnicity | ✓ | |||
| Russell AM et al. 2017 [51] | Identifying people with a learning disability: an advanced search for general practice | Learning disability | ✓ | |||
| Saperstein, A. 2012 [52] | Capturing complexity in the United States: which aspects of race matter and when? | Ethnicity | ✓ | |||
| Shah, SN et al. 2014 [53] | Measuring and Monitoring Progress Toward Health Equity: Local Challenges for Public Health | General | ✓ | ✓ | ✓ | ✓ |
| Siegel, B et al. 2012 [54] | A Quality Improvement Framework for Equity in Cardiovascular Care: Results of a National Collaborative | General | ✓ | ✓ | ||
| Smith L et al., 2017 [55] | Comparison of ethnic group classification using naming analysis and routinely collected data: application to cancer incidence trends in children and young people | Ethnicity | ✓ | |||
| Smylie, J and Firestone M 2015 [56] | Back to the basics: Identifying and addressing underlying challenges in achieving high quality and relevant health statistics for indigenous populations in Canada | Ethnicity | ✓ | |||
| Tan-McGrory, A et al. 2018 [57] | A patient and family data domain collection framework for identifying disparities in pediatrics: Results from the pediatric health equity collaborative | General | ✓ | ✓ | ||
| Thorlby R et al. 2011 [58] | How Health Care Organizations Are Using Data on Patients’ Race and Ethnicity to Improve Quality of Care | Ethnicity | ✓ | ✓ | ✓ | ✓ |
| Wang KR et al. 2020 [59] | Information Loss in Harmonizing Granular Race and Ethnicity Data: Descriptive Study of Standards | Ethnicity | ✓ | ✓ | ||
| Webster P and Sampangi S, 2014 [60] | Did We Have an Impact? Changes in Racial and Ethnic Composition of Patient Populations Following Implementation of a Pilot Program | Ethnicity | ✓ | ✓ | ✓ | |
| Wei-Chen, L et al. 2016 [61] | Improving the Collection of Race, Ethnicity, and Language Data to Reduce Healthcare Disparities: A Case Study from an Academic Medical Center | General | ✓ | ✓ | ||
| Wolff, M et al. 2017 [62] | Measuring Sexual Orientation: A Review and Critique of US Data Collection Efforts and Implications for Health Policy | Gender | ✓ | ✓ | ✓ | ✓ |
| Zhang XZ et al. 2019 [63] | Role of Health Information Technology in Addressing Health Disparities Patient, Clinician, and System Perspectives | General | ✓ | ✓ | ✓ | |
| Hutt P and Gilmour S 2010 [64] | Tackling inequalities in general practice | General | ✓ | ✓ | ||
| Scottish Government 2020 [65] | Improving data and evidence on ethnic inequalities in health: Initial advice and recommendations from the expert reference group on ethnicity and COVID-19 | Ethnicity | ✓ | ✓ | ✓ | ✓ |
| NHS England, 2020 [66] | Advancing mental health equalities strategy | General | ✓ | ✓ | ||
| NHS, 2019 [67] | NHS Mental Health Implementation Plan 2019/20–2023/24 | General | ✓ | ✓ | ||
| NHS Race and Health Observatory, 2021 [68] | Ethnic health inequalities and the NHS: Driving progress in a changing system | Ethnicity | ✓ | ✓ | ✓ | |
| Scobie S, Spencer J and Raleigh V, 2021 [4] | Ethnicity coding in English health service datasets | Ethnicity | ✓ | ✓ | ✓ | ✓ |
| NHS England, 2019 [69] | Improving identification of people with a learning disability: guidance for general practice | Learning disability | ✓ | ✓ | ||
| National Services Scotland, 2017 [70] | Measuring use of health services by equality group | General | ✓ | ✓ | ✓ | |
| Total citations | 57 | 26 | 28 | 43 | 27 |