Involvement of patients with cancer in patient safety: a qualitative study of current practices, potentials and barriers

Background Patient involvement in patient safety is widely advocated but knowledge regarding implementation of the concept in clinical practice is sparse. Objective To investigate existing practices for patient involvement in patient safety, and opportunities and barriers for further involvement. Design A qualitative study of patient safety involvement practices in patient trajectories for prostate, uterine and colorectal cancer in Denmark. Observations from four hospital wards and interviews with 25 patients with cancer, 11 hospital doctors, 10 nurses, four general practitioners and two private practicing gynaecologists were conducted using ethnographic methodology. Findings Patient safety was not a topic of attention for patients or dominant in communication between patients and healthcare professionals. The understanding of patient safety in clinical practice is almost exclusively linked to disease management. Involvement of patients is not systematic, but healthcare professionals and patients express willingness to engage. Invitation and encouragement of patients to become involved could be further systematised and developed. Barriers include limited knowledge of patient safety, of specific patient safety involvement techniques and concern regarding potential negative impact on doctor–patient relationship. Conclusions Involvement of patients in patient safety must take into account that despite stated openness to the idea of involvement, patients and health professionals may not in practice show immediate concern. Lack of systematic involvement can also be attributed to limited knowledge about how to implement involvement beyond the focus of self-monitoring and compliance and a concern about the consequences of patient involvement for treatment outcomes. To realise the potential of patients’ and health professionals’ shared openness towards involvement, there is a need for more active facilitation and concrete guidance on how involvement can be practiced by both parties.