Abstract
BackgroundTo describe the process of patient engagement to co-design a patient experience survey for people with arthritis referred to central intake.MethodsWe used a participatory design to engage with patients to co-design a patient experience survey that comprised three connected phases: 1) Identifying the needs of patients with arthritis, 2) Developing a set of key performance indicators, and 3) Determining the survey items for the patient experience survey.ResultsPatient recommendations for high quality healthcare care means support to manage arthritis, to live a meaningful life by providing the right knowledge, professional support, and professional relationship. The concept of integrated care was a core requirement from the patients’ perspective for the delivery of high quality arthritis care. Patients experience with care was ranked in the top 10 of 28 Key Performance Indicators for the evaluation of central intake, with 95% of stakeholders rating it as 9/10 for importance. A stakeholder team, including Patient and Community Engagement Researchers (PaCER), mapped and rated 41 survey items from four validated surveys. The final patient experience survey had 23 items.ConclusionThe process of patient engagement to co-design a patient experience survey, for people with arthritis, identified aspects of care that had not been previously recognized. The linear organization of frameworks used to report patient engagement in research does not always capture the complexity of reality. Additional resources of cost, time and expertise for patient engagement in co-design activity are recognized and should be included, where possible, to ensure high quality data is captured.
Highlights
To describe the process of patient engagement to co-design a patient experience survey for people with arthritis referred to central intake
The specific aim of this paper is to describe our process of co-designing a patient experience survey for people with arthritis referred to a central intake clinic
Given the challenges to include recommendations that were not common across the other two cohorts it was decided that a separate patient experience survey for this group capturing specific requirements, such as the delivery of services based on indigenous approaches to health and healing, will be developed at a future time
Summary
To describe the process of patient engagement to co-design a patient experience survey for people with arthritis referred to central intake. Carr et al BMC Health Services Research (2019) 19:355 is commensurate their needs. When patients are engaged as researchers they bring their health experiences and as partners in healthcare system design can improve the quality of care, and enable healthcare providers and administrators to meet the needs of a growing number of patients living with chronic health conditions [8, 9]. In the UK, patient and public involvement in health-care planning, service development, healthcare policy and research have gained growing importance over the past two decades [10]. In Alberta, a number of initiatives have firmly position patients in the decision-making process when shaping healthcare redesign [12, 13]
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