Patient participation in defining best practice rheumatology service provision shows significant quality-of-life impacts

By Dr Valerie Milne

Arthritis NZ understands how difficult it can be for people living with rheumatic diseases to get consistent care, and that patients are concerned about variations in care between regions. These are two reasons why Arthritis NZ supports research into patient wellbeing and defining appropriate rheumatology care. In the May 2022 issue of Joint Support we reported on the progress of a study that sought views from patients about service standards that had previously been defined in a study with rheumatologists.

and whānau are respected and valued and (2) that patients receive the right care at the right time. Three rheumatology care principles were drafted directly from the study participants.

A rheumatology service should value individuals and their experiences through positive interpersonal interactions, supportive relationships and within a health system organised with the patients’ needs at the centre.

Participants were positive about the proposed service standards. Their views, after matching them with the standards, found three more service provision statements that were not fully covered by rheumatologists’ consensus best-practice statements. These patient-generated statements have now been included, with the rheumatologists’ consensus statement in a wider patient survey that will help form the finalised rheumatology standards for publicly-provided rheumatology services.

As well as providing input on the proposed bestpractice statements, this research demonstrates that patients can provide valuable insight into service provision, which can be harnessed to shape future services. The researchers are confident that the three principles and 25 statements of components of a best practice rheumatology service generated by this research can inform policy and service changes in New Zealand.

This work highlights the importance of considering patient perspectives when developing best-practice services and makes a strong case for further research in this field. Such a focus aligns with the increasing emphasis on consumer perspectives by Te Whatu Ora.

Rachel Ngan Kee, working with the guidance of rheumatologist Professor Rebecca Grainger, led focus groups and interviews with people living with inflammatory arthritis who were recruited by Arthritis NZ for the study.

Findings from the study show that the participants’ expectations of rheumatology care fit within two broad themes: (1) that the experiences of individuals

The research process and findings have now been published in BMC Rheumatology. The article is titled Patient participation in defining best practice rheumatology service provision in Aotearoa New Zealand: a qualitative study with service consumers and is available at https://rdcu.be/c414v free for anyone to read online or download.

Grant support for this research was provided by Arthritis NZ Mateponapona Aotearoa.