Objective: To understand what patients and family members know about problems and failures in healthcare.
Design: Qualitative, semistructured open-ended interviews were conducted with 39 patients and 80 family members about their experiences of incidents in tertiary healthcare. Nineteen interviews involved more than one respondent, yielding 100 interviews in total. Participants were recruited through advertisements in the national broadsheet and tabloid print media (43%), with the help of the health services where the incidents occurred (28%), through invitations sent out by two internet marketing companies (27%) and by consumer organisations (2%).
Setting: Interviews were conducted in the homes of the respondents or over the phone. One participant emailed her responses to the questionnaire.
Results: Analysis of the interview data revealed: (1) considerable knowledge on the part of patients and relatives about health service risks, problems and incidents; (2) the insight of interviewees into care improvement opportunities; and (3) challenges faced by patients and relatives when trying to negotiate their knowledge and insights with health service staff.
Conclusion: Patients (and family members) need access to structured processes ensuring dialogue with health service personnel about perceived risks, problems and incidents. Such dialogue would reveal patients' and family members' questions and knowledge about improvement opportunities, and minimise the risk that their questions and knowledge are ignored.