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ABSTRACT Background The role of patients in healthcare research is slowly evolving, although patient roles in the research process are limited. This paper reports on a patient‐led research project aiming to develop a musical hearing training programme for patients with a cochlear implant (CI): the Musi‐CI programme. A CI is an inner ear prosthesis that allows people with severe hearing loss to hear. However, while speech can be understood, CI users cannot fully enjoy music or feel aversion to it. The Musi‐CI programme aims to reduce this music aversion to ultimately improve music enjoyment and social participation. The development of the Musi‐CI programme was supported by a consortium of professionals in CI rehabilitation and research. The aim of this paper is to describe and evaluate the Musi‐CI programme development process and its impact on professional CI rehabilitation and research. Methods Programme development was described using a 3‐layered process model of action research, distinguishing the CI user process, the healthcare professional process and the research process. To evaluate perceptions on the programme development process, consortium partners provided written comments and participated in a reflexive evaluation session that was video‐recorded. Reflexive evaluation aims for collective learning and strengthening collaboration among participants. Written comments and video data were analysed using template analysis. Results The involvement of an expert by experience was perceived as challenging but rewarding for all consortium partners, opening up new perspectives on CI‐rehabilitation practice and research. Data analysis revealed two themes on the programme development process, professional space and acknowledgement, and two themes on the outcomes on CI rehabilitation and research: critical reflection and paradigm shift. Conclusion Experts by experience represent a different knowledge domain that may contribute to change in rehabilitation and research. Patient or Public Contribution The development of the programme was initiated by a professional musician and CI user who organized the funding, had a leading role throughout the research process, including the write‐up of the results, and co‐authored this paper.

Abstract Introduction Value‐based healthcare (VBHC) focusses on increasing value for patients. Hospitals aim to implement VBHC via value improvement (VI) teams for medical conditions. To determine the patient's perspective on value, collective patient participation is important in these teams. We therefore evaluated the current state of patient participation in VI teams and share lessons learned. Methods This mixed‐methods study was conducted at seven collaborating hospitals in the Netherlands. A questionnaire (the public and patient engagement evaluation tool) was tailored to the study's context, completed by VI team members (n = 147 from 76 different VI teams) and analysed with descriptive statistics. In addition, 30 semistructured interviews were held with VI team members and analysed through thematic analysis. Data were collected between February 2022 and January 2023 and were triangulated by mapping the quantitative results to the interview themes. Results Thirty‐eight of the 76 included VI teams reported using a form of patient participation. Many respondents (71%) indicated a lack of a clear strategy and goal for patient participation. Multiple VI team members believed that specific knowledge and skills are required for patients to participate in a VI team, but this led to concerns regarding the representativeness of participating patients. Furthermore, while patients indicated that they experienced some level of hierarchy, they also stated that they did not feel restricted hereby. Lastly, patients were satisfied with their participation and felt like equal VI team members (100%), but they did mention a lack of feedback from the VI team on their input. Conclusion The results imply the lack of full implementation of patient participation within VI teams. Guidelines should be developed that provide information on how to include a representative group of patients, which methods to use, how to evaluate the impact of patient participation, and how to give feedback to participating patients. Patient and Public Contribution Two patient advisors were part of the research team and attended the research team meetings. They were involved as research partners in all phases of the study, including drafting the protocol (e.g., drafting interview guides and selecting the measurement instrument), interpreting the results and writing this article.

Abstract Aims This study aimed to determine the characteristics of patients with heart failure and high costs (top 1% and top 2–5% highest costs in perspective of the general population) and to explore the longitudinal health care utilization and persistency of high costs. Methods and results Longitudinal observational study using claims data from 2006 to 2014 in the Netherlands. We identified all patients that received a hospital treatment for chronic heart failure between 1 January 2008 and 31 December 2010. Of each selected patient, all claims from the Dutch curative health system and with a starting date between 1 January 2006 and 31 December 2014 were extracted. Pharmaceutical and hospital claims were used to establish characteristics and indicators for health care utilization. Descriptive analyses and generalized estimating equation models were used to analyse characteristics, longitudinal health care utilization and to identify factors associated with high costs. Our findings revealed that the difference in costs between top 1%, top 2–5%, and bottom 95% patients with heart failure was mainly driven by hospital costs; and the top 1% group experienced a remarkable increase of mental health costs. Top 1% and top 2–5% patients with heart failure differed from lower cost patients in their higher rate of chronic conditions, excessive polypharmacy, hospital admissions, and heart‐related surgeries. Heart‐related surgeries contributed to the incidental high costs in 54% of top 1% patients, and the costs of the remaining top 1% patients were driven by mental health and pharmaceuticals use and rates of chronic conditions and multimorbidity. Top 1% patients were relatively young. Anaemia, dementia, diseases of arteries, veins and lymphatic vessels, influenza, and kidney failure were significantly associated with high costs. The end‐of‐life period was predictive of top 1% and top 5% costs. More than 90% of the population incurred at least one top 5% year during follow‐up, and 31.8% incurred at least one top 1% year. Fifty‐seven per cent incurred multiple top 5% years whereas only 8.6% incurred multiple top 1% years. Top 5% years were more frequently consecutive than top 1% years. Conclusions Top 1% utilization occurs predominantly incidentally and among less than a third of patients with heart failure, whereas almost all patients with heart failure experience at least one top 5% year, and more than half experience two or more top 5% years. Both medical and psychiatric/psychosocial needs contribute to high costs in heart failure patients. Comprehensive and integrated efforts are needed to further improve quality of care and reduce unnecessary costs.