Patient participation in defining best-practice rheumatology service provision in Aotearoa New Zealand: a qualitative study with service consumers

Abstract

Background: Aotearoa New Zealand (AoNZ) has no agreed models for rheumatology service provision in government-funded health care. We aimed to describe what people with inflammatory rheumatic diseases who have used rheumatology services view as being important in those services, and map these views to previously collated statements describing best practice components of rheumatology services from international recommendations. If these statements did not capture all service aspects that people with inflammatory rheumatic diseases considered important, we aimed to co-create new statements with our patient-participants. Methods: We conducted one focus group and an interview with people with inflammatory rheumatic disease who had used a government-funded rheumatology service in the previous 5 years (patient-participants) and analysed data using thematic analysis. The research team mapped subthemes to previously collated best practice recommendations that had been included in a Delphi consensus exercise with rheumatologists in AoNZ and proposed new statements, based on patient-participant data. Patient-participant feedback on thematic analysis and the new statements led to a refining of statements. A patient-partner in the research team informed research design and data analysis. Results: Patient-participants viewed it as highly valuable for rheumatology services to respect and value their experiences as people and patients, and those of their whānau (Māori word for family). They expected rheumatology services to provide the right care, at the right time. Many of the subthemes mapped to the best-practice statements. However, three new principles and three new statements were developed and refined by patient-participants. The three principles addressed valuing individuals, and their whānau (family) and their experiences, and providing a patient-focused health system that supports patient participation in decision-making and self-management, and patient education. New statements related to having a specific rheumatologist and other staff for comprehensive care, having adequate nurse staffing, and active provision of outside services and support. Conclusion: It was important to patients that rheumatology services demonstrated that patients and their whānau (family) were valued. The inclusion of people with rheumatic diseases who are users of rheumatology services in service development can provide valuable insights to inform how services should be delivered.