Implementation of Patient Engagement in the Netherlands: A Stimulating Environment within a Large Academic Medical Centre.

Patients are the official third party of the Dutch healthcare system, apart from healthcare providers and insurers. Radboud university medical center (Radboudumc) is a regional centre for specialized secondary care in the Netherlands. Here innovation is recognized as a decisive factor when it comes to the implementation of patient engagement. Therefore, all employees are invited to innovate, experiment, fail and implement promising innovations into practice. In this paper, we demonstrate how this stimulating environment led to a rich collection of patient engagement activities in organizational (re-)design and in educational programs for students and employees.

Patient-Specific Actual-Size Three-Dimensional Printed Models for Patient Education in Glioma Treatment: First Experiences.

BACKGROUND: Patients with cancer need high-quality information about disease stage, treatment options, and side effects. High-quality information can also improve health literacy, shared decision making, and satisfaction. We created patient-specific three-dimensional (3D) models of tumors including surrounding functional areas and assessed what patients with glioma value (or fear) about the models when they are used to educate them about the relationship between their tumor and specific brain parts, the surgical procedure, and risks. METHODS: This exploratory study included adult patients with glioma who underwent functional magnetic resonance imaging and diffusion tensor imaging as part of preoperative work-up. All participants received an actual-size 3D model printed based on functional magnetic resonance imaging and diffusion tensor imaging. Semistructured interviews were conducted to identify facilitators and barriers for using the model and perceived effects. RESULTS: Models were successfully created for all 11 participants. There were 18 facilitators and 8 barriers identified. The model improved patients' understanding about their situation; patients reported that it was easier to ask their neurosurgeon questions based on their model and that it supported their decision about preferred treatment. A perceived barrier for using the 3D model was that it could be emotionally confronting, particularly in an early phase of the disease. Positive effects were related to psychological domains, including coping, learning effects, and communication. CONCLUSIONS: Patient-specific 3D models are promising and simple tools that could help patients with glioma better understand their situation, treatment options, and risks. These models have the potential to improve shared decision making.

Personalized Consent Flow in Contemporary Data Sharing for Medical Research: A Viewpoint.

BACKGROUND: Health data personally collected by individuals with wearable devices and smartphones is becoming an important data source for healthcare, but also for medical research. OBJECTIVE: To describe a new consent model that allows people to control their personally collected health data and determine to what extent they want to share these for research purposes. METHODS: We developed, in close collaboration with patients, researchers, healthcare professionals, privacy experts, and an accredited Medical Ethical Review Committee, an innovative concept called "personalized consent flow" within a research platform connected to a personal health record. The development was an iterative process with informal meetings, semistructured interviews, and surveys. The final concept of the personalized consent flow was reviewed by patients and improved and approved by the same patients in a focus group. RESULTS: This concept could result in optimal control for individual users, since they will answer questions about how they will share data. Furthermore, it enables users to collect data for specific studies and add expiration dates to their data. This work facilitates further discussion about dynamic and personalized consent. A pilot study with the personalized consent model is currently being carried out.

Cortical thickness is associated with gait disturbances in cerebral small vessel disease.

Although gait disturbances are present in a substantial portion of patients with cerebral small vessel disease (SVD), their pathogenesis has not been clarified as they are not entirely explained by the white matter lesions (WMLs) and lacunar infarcts. The role of cortical thickness in these patients remains largely unknown. We aimed to assess the regions of cortical thickness associated with distinct gait parameters in patients with SVD, and whether these associations were dependent on WMLs and lacunar infarcts. MRI data were obtained from 415 subjects with SVD, aged between 50 and 85 years. We assessed cortical thickness using surface-based cortical thickness analysis, and gait performance using the GAITRite system. Cortical thickness of predominantly the orbitofrontal and ventrolateral prefrontal cortex, the inferior parietal lobe, cingulate areas and visual association cortices was positively related to stride length. Thickness of the primary and supplementary motor cortices and the cingulate cortex was positively related to cadence, while thickness of the orbitofrontal and ventrolateral prefrontal cortex, anterior cingulate cortex and especially the inferior parietal lobe and superior temporal gyrus was negatively related to stride width. The associations with stride length and width were partially explained by the subcortical WMLs and lacunar infarcts. Cortical thickness may therefore be important in gait disturbances in individuals with SVD, with different cortical patterns for specific gait parameters. We suggest that cortical atrophy is part of the disease processes in patients with SVD.