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.
Background and objective Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. Setting and sample The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. Method This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein’s involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. Findings and conclusion The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process.
MULTIFILE
The Netherlands is known globally for its widespread use of bicycles and some call it a “cycling nation”. Indeed, many Dutch inhabitants own a bike and cycle frequently. Numbers show that 84% of the Dutch inhabitants from age 4 years and older own a bike. Those owners have an average of 1.3 bikes per person. This results in 18 million bikes in the Netherlands and 13.5 million bike owners.6 The Dutch use their bike as a means of transportation, but also for sports and exercise. Bike-use fits well in an active lifestyle and it is highly plausible that cycling is responsible for a large part of the daily physical activity in Dutch youth. It is estimated that Dutch people have on average a 6 months longer life expectancy attributable to bicycle use.7 It seems that the nation itself is well shaped to cycle: no large mountains, only a few small hills, and an extensive layout of cycle paths and routes in every city and village. In many urban areas separate cycle paths are very common. Our results show that many Dutch children use the bike as their way of transportation. It was demonstrated that active transportation is responsible for a large part of schoolrelated physical activity in Dutch youth.8 80% of 12-17 year-old children cycled three or more days to or from school/work.9 This resulted in an ‘A’ for the indicator active transportation (walking is included in the grade as well). Active transport is associated with increased total physical activity among youth.10,11 Also evidence is reported for an association between active transport and a healthier body composition and healthier level of cardiorespiratory fitness among youth. Although Dutch children accumulate a lot of daily physical activity through cycling, it is not enough to meet the current national physical activity guidelines of 60 minutes of moderate-to-vigorous physical activity per day. Even though cycling is an important component to the amount of daily physical activity, Dutch youth are not cycling to health
