Final Report The Feasibility of Using Electronic Health Records (EHRs) and Other Electronic Health Data for Research on Small Populations September 2013 Presented to: Presented by: Michael Millman, PhD, MPH Kelly Devers, PhD Office of the Assistant Secretary The Urban Institute for Planning and Evaluation200 Health Policy Center Independence Ave, SW 2100 M Street, NW Washington, DC 20201 Washington, DC 20037 Prepared by: Kelly Devers, PhD Bradford Gray, PhD Christal Ramos, MPH Arnav Shah, BA Fredric Blavin, PhD Timothy Waidmann, PhD Acknowledgement We would like to acknowledge the contributions of Michael Millman, our project officer from the Assistant Secretary for Planning and Evaluation, who has provided vital guidance and detailed edits and participated in all of our interviews and meetings. We would also like to recognize the members of our Technical Expert Panel (TEP) who provided guidance and insights during a day-long discussion of this project and the two white papers that make up this report. Several members of the TEP took the additional time to offer detailed edits and input that significantly strengthened this report. These efforts are much appreciated. Finally, we are grateful to the many knowledgeable federal officials and subject matter experts who agreed to participate in the tremendously informative and detailed discussions that contributed to this report. We list individuals who played a part in this project as TEP members and key interviewees in the Appendices to this report. Disclaimer This report was prepared by the Urban Institute under contract HHSP23320095654WC to the Assistant Secretary for Planning and Evaluation. The findings and conclusions of this report are those of the authors and do not necessarily represent the views of ASPE or HHS. ii Table of Contents Acknowledgement ....................................................................................................................................... ii Table of Contents ........................................................................................................................................ 1 Abstract ........................................................................................................................................................ 3 Executive Summary .................................................................................................................................... 4 Why Study Small Populations? ............................................................................................................. 4 Limitations in Using Federal Survey Data for Research on Small Populations ................................ 4 Potential Uses of Existing Electronic Health Data ............................................................................... 5 The Growing Availability of Electronic Health Data .......................................................................... 6 Potential for Future Research on Small Populations........................................................................... 9 Part I: The Challenge of Small Populations for Research on Health and Health Care: Examples from Four Under-Studied Populations ................................................................................................... 13 Introduction to Part I ........................................................................................................................... 13 Methodology for Identifying and Exploring Small Populations in This Report ............................. 14 Limitations in Federal Survey Data .................................................................................................... 14 Population #1: Asian-American Subpopulations ............................................................................... 17 Population #2: Lesbian, Gay, Bisexual, and Transgender People .................................................... 24 Population #3: Adolescents with Autism Spectrum Disorders ......................................................... 27 Population #4: Residents of Rural Communities ............................................................................... 31 Discussion/Conclusion .......................................................................................................................... 34 Appendix to Part I ................................................................................................................................ 37 Part II: The Potential Use of Electronic Health Records and Other Electronic Health Data to Improve Research on the Health and Health Care of Small Populations ............................................ 49 Introduction to Part II .......................................................................................................................... 49 Methodology .......................................................................................................................................... 51 The Need for Research on Small Populations .................................................................................... 52 The Growing Availability of Electronic Health Data ........................................................................ 54 Information Available in an Electronic Health Record..................................................................... 56 Availability of Information to Identify Small Populations ................................................................ 59 Characteristics of EHR and Other Electronic Health Data That Make Them Useful for Research ................................................................................................................................................................ 61 Technical Conditions Required for Research Using EHR and Other Electronic Health Data ..... 64 Privacy and Security Conditions Required for Research Using EHR and Other Electronic Health Data ........................................................................................................................................................ 69 Organizational Conditions Required for Research Combining Multiple Data Sources ................ 73 Potential for Future Research on Small Populations......................................................................... 82 1 Summary and Conclusions ................................................................................................................... 87 Appendix to Part II ............................................................................................................................... 90 References in Part II ............................................................................................................................. 96 Citations ................................................................................................................................................... 104 2 Abstract Background. Many small populations have distinctive health and health care needs but have been difficult to study in survey research. Objective. This report is part of a project funded by the Assistant Secretary for Planning and Evaluation to explore the feasibility of using electronic health record (EHR) and other electronic health data for research on small populations. The first part of the report illustrates the challenges and limitations of using existing federal surveys and federal claims databases for studying small populations. The second part explores the potential of the increasingly available EHR and other existing electronic health data to complement federal data sources, as well as potential next steps to demonstrate and improve the feasibility of using EHRs for research on small populations. Methods. We use four example small populations throughout the report to illustrate a range of health and health care needs and considerations for research: Asian subpopulations; lesbian, gay, bisexual, and transgender populations; rural populations; and adolescents with autism spectrum disorders. We conducted interviews with experts on the health, health care and research needs for these small populations, as well as with experts on current efforts to use EHR and other electronic health data for research. Findings are based on these interviews, literature, and feedback from a technical expert panel. Results. Challenges to studying small populations using federal survey data include their small size, uneven distribution, and lack of standardized ways to identify population members. The growing availability of EHR and other existing health information has the potential to help overcome some of these challenges, given a number of conditions are met to be able to use these data for research. These include technical, legal, and organizational conditions that each come with their own challenges. However, these challenges are being addressed by researchers around the country who have begun to use EHR and other electronic health data for research on small populations, particularly from organized delivery systems and research networks. Potential next steps may include improving data quality through validation studies and clinician engagement, development of research methods using a combination of data sources, efforts to improve the legal framework under which this type of research is regulated, and pilot studies on specific small populations. Conclusions. There is great potential for using EHR and other existing electronic health data to study small populations. As with federal survey