Online Program

Anonymity practices in health care surveys: The dilemma of how to protect respondent privacy without stifling feedback from patients

Tuesday, November 5, 2013 : 10:50 a.m. - 11:10 a.m.

S. Rae Starr, MPhil, MOrgBehav, HealthCare Outcomes & Analysis, L.A. Care Health Plan, Los Angeles, CA
Maryam Maleki, L.A. Care Health Plan, CA
Anonymous surveys of patients are used to assess the quality of services received by millions of patients. Anonymity poses an ethical dilemma that pits patient protections against analytic rigor for using patients' responses to target causes of poor health care. The challenge is to identify best practices that control privacy risks while permitting actionable analyses.

(a) Importance: Surveys identify barriers to receiving high quality care for patients' well-being. As ACA expands access, the stakes in resolving this dilemma are higher when incoming survey respondents are from vulnerable populations with more to lose, yet limited ability to report substandard care: the poor, the disabled, the very old, the very young.

(b) Why anonymity and analysis collide: Surveys are anonymous to protect the patient from fear of active or passive retaliation from the organizations or providers they are rating. Effective analysis requires identifying actionable causes tied to patients' and providers' characteristics. Those characteristics become the basis for accurately targeting corrective actions. But those combined characteristics are also identifiers that can breach anonymity and expose respondents to risk.

(d) Sources of policy: Anonymity policies derive from laws, survey protocols, research policies, accrediting agencies, and professional standards. Rules are sometimes imported across domains -- spliced and mutated, then applied out of context, in combinations that seriously weaken the actionability of patient feedback to healthcare systems.

(f) Solutions: The briefing will discuss ways to balance the protections that anonymity provides, against the patient's interests in giving clear feedback on surveys to improve health care quality.

Learning Areas:

Biostatistics, economics
Conduct evaluation related to programs, research, and other areas of practice
Ethics, professional and legal requirements
Implementation of health education strategies, interventions and programs
Planning of health education strategies, interventions, and programs
Public health or related laws, regulations, standards, or guidelines

Learning Objectives:
Explain the reasons for anonymity in health care surveys, to protect individuals from disclosure and harm. Describe the tradeoffs between anonymity and analytic rigor for improving health access for vulnerable populations. Describe qualitative and quantitative factors that increase or decrease the risk of breaching anonymity. Explain how to calculate and assess the risk of breaching anonymity in survey data. Describe issues to weigh when balancing anonymity and risk to respondents in conducting analyses.

Keyword(s): Member Surveys, Privacy

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: Served seven years as Senior Biostatistician at the largest public health plan in the United States, serving Medicaid and CHIP populations in an ethnically diverse urban county in the southwest United States. Managed CAHPS survey from 2006 to 2012 to obtain anonymous data and analyze for actionable information to guide the design of interventions to improve the quality of services and care. Negotiated anonymity rules and data release agreements with survey firms.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.