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

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.