The objective of this study is to assess patient preferences for treatment-related benefits and risk of disease relapse in the management of low disease states of psoriatic arthritis (PsA). Focus groups with patients and a literature review were undertaken to determine the characteristics of treatment and symptoms of PsA important to patients. Patient preferences were assessed using a discrete choice experiment which compared hypothetical treatment profiles of the risk and benefits of treatment withdrawal. The risk outcome included increased risk of disease relapse, while benefit outcomes included reduced sickness/nausea from medication and changes in health-related quality of life. Each patient completed 12 choice sets comparing treatment profiles. Preference weights were estimated using a logic regression model, and the maximum acceptable risk in disease relapse for a given improvement in benefit outcomes was elicited. Final sample included 136 patients. Respondents attached the greatest importance to eliminating severe side effects of sickness/nausea and the least importance to a change in risk of relapse. Respondents were willing to accept an increase in the risk of relapse of 32.6 % in order to eliminate the side effects of sickness/nausea. For improvements in health status, the maximum acceptable risk in relapse was comparable to a movement from some to no sickness/nausea. The study suggests that patients in low disease states of PsA are willing to accept greater risks of relapse for improvements in side effects of sickness/nausea and overall health status, with the most important benefit attribute being the elimination of severe sickness or nausea.

Introduction Emergent evidence suggests that patients can identify and report safety issues while in hospital. However, little is known about the best method for collecting information from patients about safety concerns. This study presents an exploratory pilot of three mechanisms for collecting data on safety concerns from patients during their hospital stay. Method Three mechanisms for capturing safety concerns were coproduced with healthcare professionals and patients, before being tested in an exploratory trial using cluster randomisation at the ward level. Nine wards participated, with each mechanism being tested over a 3-month study period. Patients were asked to feed back safety concerns via the mechanism on their ward (interviewing at their bedside, paper-based form or patient safety ‘hotline’). Safety concerns were subjected to a two-stage review process to identify those that would meet the definition of a patient safety incident. Differences between mechanisms on a range of outcomes were analysed using inferential statistics. Safety concerns were thematically analysed to develop reporting categories. Results 178 patients were recruited. Patients in the face-to-face interviewing condition provided significantly more safety concerns per patient (1.91) compared with the paper-based form (0.92) and the patient safety hotline (0.43). They were also significantly more likely to report one or more concerns, with 64% reporting via the face-to-face mechanism, compared with 41% via the paper-based form and 19% via the patient safety hotline. No mechanism differed significantly in the number of classified patient safety incidents or physician-rated preventability and severity. Discussion Interviewing at the patient's bedside is likely to be the most effective means of gathering safety concerns from inpatients, potentially providing an opportunity for health services to gather patient feedback about safety from their perspective.

Background: Estimates suggest that, in NHS hospitals, incidents causing harm to patients occur in 10% of admissions, with costs to the NHS of > £2B. About one-third of harmful events are believed to be preventable. Strategies to reduce patient safety incidents (PSIs) have mostly focused on changing systems of care and professional behaviour, with the role that patients can play in enhancing the safety of care being relatively unexplored. However, although the role and effectiveness of patient involvement in safety initiatives is unclear, previous work has identified a general willingness among patients to contribute to initiatives to improve health-care safety. Aim: Our aim in this programme was to design, develop and evaluate four innovative approaches to engage patients in preventing PSIs: assessing risk, reporting incidents, direct engagement in preventing harm and education and training. Methods and results: We developed tools to report PSIs [patient incident reporting tool (PIRT)] and provide feedback on factors that might contribute to PSIs in the future [Patient Measure of Safety (PMOS)]. These were combined into a single instrument and evaluated in the Patient Reporting and Action for a Safe Environment (PRASE) intervention using a randomised design. Although take-up of the intervention by, and retention of, participating hospital wards was 100% and patient participation was high at 86%, compliance with the intervention, particularly the implementation of action plans, was poor. We found no significant effect of the intervention on outcomes at 6 or 12 months. The ThinkSAFE project involved the development and evaluation of an intervention to support patients to directly engage with health-care staff to enhance their safety through strategies such as checking their care and speaking up to staff if they had any concerns. The piloting of ThinkSAFE showed that the approach is feasible and acceptable to users and may have the potential to improve patient safety. We also developed a patient safety training programme for junior doctors based on patients who had experienced PSIs recounting their own stories. This approach was compared with traditional methods of patient safety teaching in a randomised controlled trial. The study showed that delivering patient safety training based on patient narratives is feasible and had an effect on emotional engagement and learning about communication. However, there was no effect on changing general attitudes to safety compared with the control. Conclusion: This research programme has developed a number of novel interventions to engage patients in preventing PSIs and protecting them against unintended harm. In our evaluations of these interventions we have been unable to demonstrate any improvement in patient safety although this conclusion comes with a number of caveats, mainly about the difficulty of measuring patient safety outcomes. Reflecting this difficulty, one of our recommendations for future research is to develop reliable and valid measures to help efficiently evaluate safety improvement interventions. The programme found patients to be willing to codesign, coproduce and participate in initiatives to prevent PSIs and the approaches used were feasible and acceptable. These factors together with recent calls to strengthen the patient voice in health care could suggest that the tools and interventions from this programme would benefit from further development and evaluation. Trial registration: Current Controlled Trials ISRCTN07689702. Funding: The National Institute for Health Research Programme Grants for Applied Research programme.