Patient experience in research (UEXPI)

Goals of the unit:

To be a link between the patient and health research.
Create spaces, dynamics, and methods of co-creation between profesionals and patients, with the final goal of analyzing their needs, generate ideas, experiment and learn, and generate health outcomes and wellbeing.
Incorporate the expectatives, needs and emotions of the patients in the research field with the use of PREMs.
Map the patient experience with patient journeys.

+ Info

Consulting to researchers on co-creation and project design based on patients real needs: workshops on participatory action research.
Identification and selection of expert patients to participate in research projects (recruiting and profile selection)
Consulting to researchers on writing and dissemination of scientific results adapted to patients and society: provide help to the researchers who request it with the preparation of adapted summaries and graphical abstracts for scientific journals, as well as graphical material for research dissemination to patient associations (amplify the impact of the scientific projects through the associations channels and social media).
Consulting on the design of information materials and informed consent forms to patients and particular demographic groups (minors, people with cognitive deterioration…) for research protocols in observational studies.
Design and elaboration of new methods, tools and indicators to measure the subjective experience of the patient: PREM (patient-reported experience).
Mapping of the patient experience through patient journeys.
Evaluation of the literacy on health issues in specific patient populations.

The Biobank is attached to 2 external committees: