“Doing research relevant for us and with us” – Key lessons from webinar series on patient involvement in research

The seminars were run by The WHO Collaborating Center for Research and Training in the Patient Perspective on Medicines Use together with the patient organisation Patient in Focus. Below a short description of the webinars:

1. Patients involvement in research programming and implementation

At January 13th, Associate professor Lotte Stig Nørgaard presented and discussed a paper on patient involvement in research programming and implementation (by Abma et al., 2014) and a recent PhD.-thesis on patient-centeredness in pharmacy practice (by Olson, 2020).

Main points from the discussion:

• patient involvement in agenda setting is not automatically followed by patient involvement in programming and implementation
• the so-called Dialogue Model can be used to stimulate the inclusion of the patients’ perspectives in research
• the literature describes a long list of patient-centredness models. Among them, the newly developed “Team-based Outpatient Pharmacist Practice for Patient-Centeredness Model”(TOPP model)
• researchers should value patient-centeredness as an outcome rather than as a process measure that is a means to an end.

See PowerPoint presentation: Presentation and discussion of paper on patient involvement in research programming and implementation and thesis on patient-centeredness

2. Exploring citizen science in drug outcome research

At February 24^th, Associate professor Lourdes Cantarero Arevalo presented and discussed two papers on citizen science in the health field (by Wiggins and Wilbanks (2019) and by Petersen et al., (2020)). The active involvement of citizen in co-creating research agendas, collaborating , analyzing data and disseminating results, with academic investigators improve processes and outcomes and enhances citizens research literature and empowerment.

Main points from the discussion:

• Citizen engagement in knowledge production can enable inclusive health policy making
• Citizen science (CS) can enhance science knowledge and literacy (e.g. knowledge of science content, science applications, risks and benefits of science, and familiarity with scientific technology)
• CS increases scientific thinking (e.g. ability to formulate a problem bases on observation, develop hypotheses, design a study, and interpret findings)
• CS can empower participants and increasing self-efficacy (e.g. belief in one’s ability to tackle scientific problems and questions, reach valid conclusions, and devise appropriate solutions)
• CS can increases community-building, social capital, social learning and trust (e.g. science as a tool to enhance networks, strengthen mutual learning, and increase social capital among diverse groups)
• Changes in attitudes, norms and values (e.g. about the environment, about science, about institutions)

See PowerPoint presentation: Citizen Science: something for us?

3. How to involve users in health care

At March 24^th, Project leader Josine Legêne from ViBIS (Knowledge Center for User Involvement in Health Care) presented how the center work with user involvement through co-creation. She explained how the work on both an organizational and an individual level; how users are involved in different ways in shared decision making, how to work with decision aids, and finalized with a list of 12 tips for how to establish sustainable user involvement. Main point from the discussion were:

• that user involvement is not equivalent to patient-centered practice or user perspectives on medicine use
• that decision support tools for short- and long-term contacts between health care professionals and users are very different

See ViBIS presentation (In Danish)