Patients as active partners in safety? An exploration of the clinical and legal issues from the perspective of patients and their carers

Contact: Carole Doherty, Senior Lecturer, Health Care Management

Patients’ experiences and concerns have generally remained peripheral in efforts to improve  patient safety. Our understanding of harm more often being informed by clinically based knowledge, resulting in more narrow definitions and prescriptions for improvement. The study aimed to inform thinking about the practical implications, clinical and legal, arising from policy recommendations that patients should be active partners in managing the safety of their care.

The research consisted of a single case study with longitudinal data collection, merging face-to-face narrative interviews with patients and carers, ethnographic observation and documentary analysis. In addition, the research adopted a relatively innovative approach, asking participants to complete incident reporting forms and compare them to those of clinicians.

Central to the analysis was the synthesis of participants’ understanding of safety and harm and the factors within patient-clinician relationships that encourage or discourage participants from being more actively involved in the safety of their care.

Data analysis and findings included:

• A framework of patients’ and caregivers’ understanding of safety was developed, linking 1st order concepts to 2nd order themes and aggregate dimensions.
• A taxonomy of ways that clinicians can enhance patient/carer active participation in safety was developed.
• Identification that a major area of concern was missed opportunities for cancer diagnosis in primary care.
• Generally, patients defer to the doctor in respect of treatment decision-making.
• While most patients and their caregivers wanted detailed information and discussion, they did not necessarily expect that this would be provided.
• Both patients and caregiver participants perceived that signing the consent form was an obligatory routine, principally to protect doctors from legal action should something go wrong. A patient information leaflet was developed to inform inpatients about the consent process, using quotes from patients themselves.
• Of 100 patients agreeing to participate in the incident reporting trial, only 13 submitted incident report forms. The types of harm reported were qualitatively different to those reported by staff.

Results suggest a number of areas where patient safety could be improved including changes in consent processes, narrative competence of staff, and self-referral to avoid missed opportunities for cancer diagnosis. Recommendations were also made for improving the measurement of safety culture, including measuring administrative processes, implementing and monitoring a system for feedback of adverse events from hospitals to primary care. There was no evidence to suggest that patient incident reporting would be effective for measuring safety.

References

• Doherty C., Stavropoulou C., Saunders MNK. & Brown T. (2015) The consent process: enabling or disabling patients’ active participation? Health.  doi:10.1177/1363459315611870
   
• Doherty C., Stavropoulou C. and Dickinson L. (2015) Patients’ willingness to complete written incident report forms in one UK tertiary cancer hospital. Clinical Risk. 21(5) 77–82 doi: 10.1177/1356262215616013
   
• Doherty C., Stavropoulou C. and Saunders MNK. Editorial: ‘Consent to treatment in the UK: Time for practice to reflect the law’. Journal of Health Services Research and Policy. Published online  February 2, 2016, doi: 10.1177/1355819616629502