Table 4 Examples of how grant proposals changed after receiving the committee’s advice

1) Added details on patient involvement

“During the preparation phase of this project proposal, the committee of experienced patients (Harteraad) was actively involved.”

“During the preparation phase of this project proposal, the committee of experienced patients (Harteraad) was actively involved. Patients reviewed a draft of the proposal and provided input. For example, an important comment involved privacy aspects. A discussion about privacy aspects of big-data analysis is considered important during the project. Therefore, we will set up a discussion panel, including researchers, doctors, legal officers and patients”

2) Changed use of language

Only an English summary

Dutch summary was added

3) Added details on dissemination of results

No information on dissemination of the research results

“The study outcomes will be shared with all relevant parties and stakeholders involved in [clinical] guideline adaptations, e.g., health care insurance companies, and determine the steps towards integration in guidelines.”

4) Added details on safety and risks of an intervention

1) Patient risks were not specifically mentioned.

2) No information on data storage

1) “Patient risks include the risk of hypernatremia, worsening heart failure and worsening renal function, which will be closely monitored during the study by adverse event monitoring.”

2) “Data will be stored in a protected database (Open Clinica)”

5) Added details on relevance of the study

“Shared Decision Making (SDM) is of great importance when decisions can have large consequences for quality of life (QoL).”

“SDM is of great importance when decisions can have large consequences for QoL. Research shows a weak, but positive relation between SDM and quality of life. When patients feel involved in decisions, it relates to a better understanding of possible choices, more satisfaction of the decision process and more trust in the physician.”