Unique insight in the disease experience
By properly instructing patients and researchers, researchers can benefit from the unique insights into the disease experience of patients. For Dr Duiverman’s own studies, patient advice has resulted in setting up 1. new studies; 2. better information and conditions for patients that participate in studies, ranging from more accessible patient information to logistic issues such as the presence of walkers for a walking test; 3. the choice for better outcome measures assessing a patient’s perspective, for example by applying questionnaires with relatable questions assessing quality of life.
A unique specific example of utmost importance to patient participation in her research is the RECONSIDER trial: severely disabled patients with respiratory failure indicated that hospitalization for the initiation of mask ventilation, as was done in regular care, was experienced as a burden and increased their symptoms. In collaboration with patients, the team developed a study investigating home initiation of mask ventilation with the use of telemonitoring. It was shown that home initiation was as effective as hospital-based ventilation, significantly cheaper, and preferred by almost all participants.
Figure: Mask ventilation at home in the comfort of the patient’s own bed and bedroom.
Sterk Patient Participation Award
This commitment to optimizing patient participation is unique in the Netherlands and Dr Duiverman has rightfully been awarded the Sterk Patient Participation Award from the Dutch Lung Foundation in 2020. She is using the award to make a short animation movie for researchers and patients to explain patient participation using specific examples of effective patient participation. Moreover, using the award, Dr Duiverman and colleagues are developing a second animation movie that helps patients to understand study information better. This was initiated after patients gave feedback that the standard patient information forms are often difficult to read. These types of animations are examples of better and more effective patient research information.
Implementation of the home initiation strategy
The team of Dr. Duiverman is now working on implementation of the home initiation strategy, which is supported by funding from ZonMW. For this implementation process, the team is also collaborating in focus groups with different stakeholders including patients that need mask ventilation. Despite the fact that not all problems have been solved yet, patients in the entire country now start their treatment at home. We expect that in the coming years starting chronic ventilation at home will be standard practice in the Netherlands.