Co-design of a patient experience survey for arthritis central intake: an example of meaningful patient engagement in healthcare design.

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  • Additional Information
    • Source:
      Publisher: BioMed Central Country of Publication: England NLM ID: 101088677 Publication Model: Electronic Cited Medium: Internet ISSN: 1472-6963 (Electronic) Linking ISSN: 14726963 NLM ISO Abbreviation: BMC Health Serv Res Subsets: MEDLINE
    • Publication Information:
      Original Publication: London : BioMed Central, [2001-
    • Subject Terms:
      Health Services Research*; Arthritis/*therapy ; Patient Participation/*statistics & numerical data ; Patient Satisfaction/*statistics & numerical data ; Quality of Health Care/*standards; Humans ; Research Design
    • Abstract:
      Background: To describe the process of patient engagement to co-design a patient experience survey for people with arthritis referred to central intake.
      Methods: We 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.
      Results: Patient 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.
      Conclusion: The 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.
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    • Grant Information:
      201300472 Alberta Innovates - Health Solutions; Planning Grant 20132PLH Institute of Musculoskeletal Health and Arthritis; MOC-13-007 Arthritis Society; N/A Alberta Health Services
    • Contributed Indexing:
      Keywords: Arthritis; Co-design; Patient engagement; Patient experience
    • Publication Date:
      Date Created: 20190606 Date Completed: 20190923 Latest Revision: 20200225
    • Publication Date:
      20240105
    • Accession Number:
      PMC6549374
    • Accession Number:
      10.1186/s12913-019-4196-9
    • Accession Number:
      31164176