Collection of Patients' Disability Status by Healthcare Organizations: Patients' Perceptions and Attitudes

Recent policies call for healthcare organizations to consistently document patients' disability status for the purpose of tracking the quality of care experienced by patients with disabilities. The purpose of the study was to explore patients' attitudes toward healthcare organizations collecting disability status. We surveyed a convenience sample of patients in three outpatient clinics, including primary care and rehabilitation clinics. A total of 303 patients participated; 49% self-identified as disabled, 59% were female and the mean age was 52 years. The majority of participants (88%) either agreed or strongly agreed that it is important for healthcare organizations to collect information about disabilities; 77% stated that they were comfortable or very comfortable with healthcare organizations collecting this information. By contrast, we found that almost a quarter of participants had concerns with front desk staff collecting disability status information. When we presented disability questions endorsed by the Health and Human Services Department, over a quarter of participants (28%) felt that the questions were not inclusive of all disability categories. Although patients are supportive of healthcare organizations collecting disability status information, concerns exist regarding how the information is collected and which categories are included, suggesting the need for continued development of evidence-based, patient-centered methods and questions.