Based on the literature, the level of patient involvement can range from “information”, where the patient is informed about the research (passive subject) (Pomey et al., 2015) to patient-led research.
Obtain information, opinions, advice, experiences
Establish priorities, identify research topics and participate in the dissemination of results, etc.
Obtain feedback and advice on specific research activities
Comment on forms and surveys, study design, data collection methods, outcome measures, analysis of results, relevance of results, etc.
Work directly with patients throughout the research process
particularly at the planning stage - to ensure that their expectations and concerns are understood and addressed, and that the research process responds to those aspirations and concerns.
Active partnership with the patient in all aspects of the research process
including research priorities, research question, research design, data collection methods, outcome measures, analysis of results, relevance of results, dissemination of results, etc.
Decisions about the research process are shared. Research grant applications, being a member of the study advisory group, and collaborating with researchers to disseminate the results of a research project
Within a single project, different levels of involvement may coexist, independently or as a continuum throughout
the research process.
Note that in the SCCL-PPI model :
- The lowest level of involvement will correspond to an already active involvement by participating in the research process. This level, named in our model “participation” differs from the concept of "participation" as defined by INVOLVE or NHS, where people take part in a research study (passive subject).
- Research led by patients as defined by other models, will not be conducted. Instead, an active partnership or co-creation will represent the highest level of involvement in the SCCL-PPI model.