The voice of patients in system redesign: A case study of redesigning a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis

Abstract

Background The published literature demands examples of health‐care systems designed with the active engagement of patients to explore the application of this complex phenomenon in practice. Methods This case study explored how the voice of patients was incorporated into the process of redesigning an element of the health‐care system, a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis (RA)—centralized intake. The phenomenon of patient engagement using “patient and community engagement researchers” (PaCERs) in research and the process of redesigning centralized intake were selected as the case. In‐depth evaluation of the case was undertaken through the triangulation of findings from the document review and participants’ reflection on the case. Results In this case, patients and PaCERs participated in multiple activities including an initial meeting of key stakeholders to develop the project vision; a patient‐to‐patient PaCERs study to gather perspectives of patients with RA on the challenges they face in accessing and navigating the health‐care system, and what they see as key elements of an effective system that would be responsive to their needs; the development of an evaluation framework for future centralized intake; and the choice of candidate centralized intake strategies to be evaluated. Conclusions The described feasible multistep approach to active patient engagement in health‐care system redesign contributes to an understanding of the application of this complex phenomenon in practice. Therefore, the manuscript serves as one more step towards a patient‐centred health‐care system that is redesigned with active patient engagement.

Solution Model for Enhancing the Experiences of Urban First Nations and Métis Patients Accessing and Navigating the Health System for Inflammatory Arthritis Care

“…Instead, two certified and experienced non-Indigenous PaCERs with osteoarthritis (JM & ST), who had led a full Set, Collect, and Reflect process in a group of patients with rheumatoid arthritis (Lopatina et al, 2018), were brought on to the research team. They joined two non-Indigenous academic researchers who had previously worked with the PaCER research method (EL & DM), and two Indigenous academic physicians (CB & LC) who practice at the Elbow River Healing Lodge, which is an urban Indigenous primary health service in Calgary, Alberta, Canada.…”

“…With the urban First Nations and Métis patients recruited from the Elbow River Healing Lodge, we explored experiences accessing and navigating the health care system for their arthritis using an adapted interview guide from the non-Indigenous Rheumatoid Arthritis Study that had previously been conducted (Lopatina et al, 2018). This guide addressed topics relating to the impact of inflammatory arthritis on the participants' lives, self-management strategies, their journeys to inflammatory arthritis diagnosis, and their experiences with medication.…”

“…Initial access to rheumatology care; b. Ongoing access to rheumatology care; c. Information about the disease and resources for those living with arthritis; d. Fear of the future; and e. Collaborative and continuous care (Lopatina et al, 2018).…”

“…First, the PaCER researcher conducted preliminary coding on the interviews and field notes based on both elements of Glaser and Strauss's (1967) grounded theory method (Hallberg, 2006) and the framework developed in the non-Indigenous study (Lopatina et al, 2018). These preliminary codes were reviewed with a second PaCER researcher who has osteoarthritis.…”

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

“…The PaCER method is a peer-to-peer inductive research approach designed to create a robust collective patient voice and maximize patient engagement throughout the research process [7, 12, 13, 18]. Using the same process, patients with RA provided their perspectives on the challenges they face in accessing and navigating the health care system, and what they viewed as key components of an effective system that would be responsive to their needs [19]. The First Nations Metis and Inuit patients with rheumatoid arthritis provided several recommendations including the importance of clinic staff who understand their needs; the importance of developing wellness strategies specifically for this cohort of patients [20].…”