Patient and public involvement in research
The Danish Cancer Society wants to advance patient involvement in cancer research.
Patient and public involvement in research (PPI-R) mean involving patients and, in some cases, relatives in various stages of the research projects. The purpose is to include the perspective of the patients to increase the quality, relevance and value of research projects and focus more on the benefit of the patients.
Introduction
The Danish Cancer Society is a patient organisation that represents cancer patients. The patients are the end users who benefit from the research outcome. Therefore, the relevance and benefits for cancer patients should, when possible, be reflected in research projects.
As a major funder of Danish cancer research, the Danish Cancer Society would like to advance patient involvement in cancer research with a particular focus on the following:
- Relevance and quality of the knowledge produced by research
- Appropriateness of the research procedures applied
- Democratic representation of patients and the public in research
There are several approaches to patient involvement in cancer research. It is not mandatory to involve patients in all research projects. Still, it must be considered if and how involving patients and the public is relevant in the research projects and different stages of the research.
In the Funding possibilities and guidelines, section 3, you find recommendations on including patient involvement in funding applications. Sometimes, the applicant´s institution may have a compulsory patient involvement strategy that must be considered. Relevant material or guidance may also be available at the applicant´s institution.
How to involve patients and the public in research
There are many different ways to involve patiens and the public in research. In the following you find examples of levels of PPI-R, examples of how to involve patient and the public in research, and examples of what is not considered as involvement on their own.
Levels of PPI-R
- None - participants have no active role in the project
- Information - participants are informed and kept updated on the project
- Consultation - participants are asked for their opinion on parts of the project
- Involvement - participants are actively involved in the project, but project managers make decisions
- Collaboration - participants collaborate with project managers, and decisions are made together
- Empowerment - participants cooperate with project managers, and participants make decisions
Examples of PPI-R
- Participants are involved in the relevance of the research theme and prioritising aims within the research project
- Participants help ensure that the recruitment of patients for clinical studies is feasible and that different groups of patients are represented
- Participants contribute to develope written information and informed consent in a plain language
- Participants help ensure that the content of the intervention/treatment is relevant and feasible
- Participants contribute to develope questionnaires, e.g., relevance, written in plain language
- Participants are involved in the evaluation of the PPI process
The following examples are NOT on their own considered PPI-R
- Recruitment of patients for clinical studies
- Research on patient samples or biological material
- Confirmation of informed consent/consent declaration
- Information on research projects and results to users
- Surveys and qualitative research such as patient interviews, etc.
- Definition of patient effects as a project goal
- Research before customised medicine or research that has received ethical approval
Examples of involvement in funded projects
There are many different ways to involve patients and the public in research.
Here you will find examples of different projects, supported by the Danish Cancer Society, that involve patients and/or the public in their research.
The examples are in Danish.
Validering af redskab til at undersøge behovet for støtte hos pårørende
More examples will be added.
Useful links
Kreftforeningen (Norway): Brukermedvirkning i forskning (in Norwegian only)
ViBIS: User involvement in research
The Danish Cancer Institute (DCI) has developed a guideline for local researchers with information about patient and public involvement in research. For inspiration, please find the brochure here:
Patient and public involvement in research (pdf)Contact information
Patient and Public Involvement Panel, contact: KBF-patient@cancer.dk
Questions regarding the application system and guidelines, please contact Funding and follow up on e-mail: forskningsbevilling@cancer.dk