How do I involve the patient?
You can involve patients in scientific research in various ways. Think of sending a questionnaire, talking to patients during a focus group, or setting up a patient advisory council.
Participation ladder
In these different ways, patients fulfil different roles. These roles are represented in a participation ladder. This participation ladder has five steps, with 'no participation' on the lowest step. The five steps are:
- Control: Patients (or patient organisations) are the commissioner of the research and have control over the content.
- Collaboration: Patients and researchers are equal partners and often make decisions together. Patients can exercise influence on all aspects that are discussed. An example is the participation of patients in the steering committee of a study.
- Advice: Patients actively contribute ideas about research proposals and give their opinion. Here too, they do not take part in the decision. An example is organising a sounding board group linked to a study or a patient advisory council linked to a research department.
- Consultation: Patients share their individual experiences, but have no influence on the decisions that are made. Here, you can think of submitting a questionnaire about the content of an information folder or organising a focus group.
- No participation: Patients only participate as test subjects in a study.
Not every research project is suitable for every step of the participation ladder. And at different stages of research, some roles are more appropriate than others. So it is not the case that the highest step is necessarily better. Which role fits best also depends on the type of research. The participation matrix is a useful tool to help patients determine their roles.
What does Lung Foundation Netherlands offer?
We can help you with patient participation in various ways:
Contact with experiential experts
An experiential expert is a patient who reflects on his own experiences, supplements them with the experiences of others, who can think beyond the disease and who has the skills to communicate this well. You can engage an experiential expert to, for example, read a grant application, or to participate in a project group. You can submit a request for this to us. We then place this request in a private online environment. Experiential experts then decide for themselves whether or not to respond to it. We will check that there are no conflicts of interest. Experiential experts have signed a statement to treat your information confidentially.
Lung Panel
The Lung Panel consists of a fixed group of approximately 1,400 people with lung disease who regularly complete questionnaires. We also invite participants to participate in group discussions, surveys or interviews through this panel. We can submit a questionnaire that you have prepared to this panel.
Support in setting up a Patient Advisory Council
A patient advisory council linked to your research department can advise you and your colleagues throughout the research process. We can support you in setting up such a patient advisory council.
Would you like more information or would you like to use one of the above options? Please contact us via ervaringsdeskundigen@longfonds.nl.
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