Best Practices for Establishing Georgia's Alzheimer's Disease Registry

In May 2014, the Georgia General Assembly enacted legislation establishing the Alzheimers Disease Registry (Registry) in order to generate new data for research and policy planning.1 The Georgia Alzheimers and Related Dementias State Plan Task Force (Task Force) bill followed similar federal legislation.2 This state action has not only drawn tremendous attention to the continued prevalence of Alzheimers disease © 2016 Elizabeth Weeks Leonard, Rui Bu, and Amanda Brown * Professor Elizabeth Weeks Leonard is Professor of Law at the University of Georgia School of Law, specializing in health care financing and regulation. She holds a B.A. from Columbia University and J.D. from the University of Georgia School of Law. We authors are especially grateful to Dr. Toni P. Miles, Director, Institute of Gerontology, for inspiring and supporting this project. ** Rui Bu is a former Faculty Research Fellow of Professor Elizabeth Weeks Leonard; J.D. May 2014, University of Georgia School of Law; LL.B. June 2011, East China University of Political Science and Law (Shanghai, China). He currently works in Orrick, Herrington & Sutcliffe LLPs Hong Kong office. *** Amanda A. Brown is a 2012 graduate of the University of Georgia School of Law. She has spent one year working as a law clerk for Superior Court Judge Jack Partain and fourteen months working as a Senior Attorney II for Primerica, Inc. Currently, she is working towards a masters in public health at the University of Georgia. She also works as a paid research assistant and a volunteer attorney at Georgia Legal Services. 1. H.R. 966, 152d Gen. Assemb. , Reg. Sess. (Ga. 2014) (There is established within the Department of Public Health the Alzheimers Disease Registry. The purpose of the registry shall be to assist in the development of public policy and . . . shall provide a central data base of individuals with Alzheimers disease or related disorders.); GA. CODE ANN. § 31-2A-17 (2015). 2. Laura Raines, State Task Force Addressing Major Aging Issues, ATLANTA J. CONST. (Oct. 21, 2013), http://www.ajc. com/news/business/statetask-force-addressing-major-aging-issues/nbTLN/ (Georgias task force was influenced by the National Alzheimers Project Act in 2011.). 222 MINN. J. L. SCI. & TECH. [Vol. 17:1 among the population of Georgia but also raised a series of questions regarding the practicability, legality, and effectiveness of the Registry.3 The lessons learned in Georgia, as the Registry implementation moves forward, will provide guidance for other states interested in collecting similar data. In Section I of this article, we describe the legislative history and operation of the Registry. In Section II, we compare the two other populationbased Alzheimers disease registries in the United States. In Section III, we identify legal and ethical problems that may arise as the Registry becomes fully operational. In Section IV, we identify specific concerns regarding the data collection and other procedural rules of the Registry. Finally, in Section V, we articulate best practices for the Georgia Registry, considering both the unique circumstances of the state as well as generalizable concerns for other states. I. Georgia Alzheimers Disease Registry. 226 A. State Initiative Against Alzheimers Disease . 226 B. Scope And Objective Of The Georgia Registry . 230 C. Stakeholders Efforts To Establish Registry. 231 II. Other Comprehensive Population-Based Alzheimers Disease Registries In U.S. . 234 A. South Carolina . 235 B. West Virginia . 237 C. Georgia Features And Lessons Learned. 239 III. Legal And Ethical Concerns Of The Registry . 242 A. Constitutionality Of The Registry. 243 B. Georgia Constitutional Right To Privacy. 246 C. The Health Insurance Portability And Accountability Act. 250 D. Privacy Risks Despite Statutory Confidentiality Requirement. 257 E. Adverse Effect On Physician-Patient Relationship. 259 IV. Procedural Rules. 261 3. See, e.g., Memorandum from Toni Miles, MD, Institute of Gerontology, University of Georgia and Organizer of the North Georgia/UGA Sponsored Stakeholders Meeting to Brenda Fitzgerald, MD, State Health Commissioner, Georgia Department of Public Health (June 18, 2014) (on file with author) [hereinafter Sponsored Stakeholders Meeting Memorandum] (discussing the scope of the Registry in terms of data collection methods, data access, and data usage). An extensive review of the Stakeholders Meeting is discussed infra Part I.C. 2016] BEST PRACTICES 223 A. Mandatory And Permissive Reporters. 262 B. Data Content And Retention. 263 C. Data Sharing. 266 V. Best Practice For Establishing The Registry. 268 A. Private Registries And Stakeholder Advisory Board . 268 B. Dual Data-Sharing Procedure. 269 C. State Medicaid Incentive Program And Other Rewarding Mechanisms . 271 D. Medical-Legal Partnership. 272 E. Disparate Reporting . 273 F. Education And Outreach . 274 VI. Conclusion. 275