Involving 'authentic' cancer patients, their caregivers, and multidisciplinary professionals in a quality improvement trajectory in a hospital cancer pathway

Inge Melchior,1,2 Albine Moser,2,3 Marja Y Veenstra,4 Kon-Siong Jie1,2 1Department of Internal Medicine, Zuyderland Medical Centre, Sittard, The Netherlands; 2Research Centre Autonomy and Participation of Chronically Ill people, Zuyd University of Applied Sciences, Heerlen, The Netherlands; 3Department of Family Medicine, CAPHRI, Maastricht University, Maastricht, The Netherlands; 4Burgerkracht Limburg [Citizen Power in Limburg], Sittard, The Netherlands Introduction: The implementation of oncology care pathways that standardize organizational procedures has improved cancer care in recent years. However, the involvement of “authentic” patients and caregivers in quality improvement of these predetermined pathways is in its infancy, especially the scholarly reflection on this process. We, therefore, aim to explore the multidisciplinary challenges both in practice, when cancer patients, their caregivers, and a multidisciplinary team of professionals work together on quality improvement, as well as in our research team, in which a social scientist, health care professionals, health care researchers, and experience experts design a research project together.Methods and design: Experience-based co-design will be used to involve cancer patients and their caregivers in a qualitative research design. In-depth open discovery interviews with 12 colorectal cancer patients, 12 breast cancer patients, and seven patients with cancer-associated thrombosis and their caregivers, and focus group discussions with professionals from various disciplines will be conducted. During the subsequent prioritization events and various co-design quality improvement meetings, observational field notes will be made on the multidisciplinary challenges these participants face in the process of co-design, and evaluation interviews will be done afterwards. Similar data will be collected during the monthly meetings of our multidisciplinary research team. The data will be analyzed according to the constant comparative method.Discussion: This study may facilitate quality improvement programs in oncologic care pathways, by increasing our real-world knowledge about the challenges of involving “experience experts” together with a team of multidisciplinary professionals in the implementation process of quality improvement. Such co-creation might be challenging due to the traditional paternalistic relationship, actual disease-/treatment-related constraints, and a lack of shared language and culture between patients, caregivers, and professionals and between professionals from various disciplines. These challenges have to be met in order to establish equality, respect, team spirit, and eventual meaningful participation. Keywords: cancer care pathways, experience-based co-design, authentic cancer patients, patient involvement, caregivers’ involvement, qualitative research