Patient involvement in research priorities (PIRE): a study protocol.

Area of Science:

• Oncology
• Patient-centered research
• Health services research

Background:

• Patient involvement in healthcare research is increasing globally.
• Aligning research priorities with patient experiences is crucial for cancer care.
• Discrepancies exist between patient-identified needs and current research focus.

Purpose of the Study:

• To challenge conventional research by including patients, relatives, and patient organizations.
• To identify, discuss, and prioritize supportive care and rehabilitation issues in future cancer research.
• To develop a patient-centered research agenda for primary malignant brain tumors and acute leukemia.

Main Methods:

• Exploratory qualitative study using focus group interviews (FGIs).
• Separate FGIs conducted for patients and relatives with primary malignant brain tumors and acute leukemia.
• Involvement of clinical specialists and patient organizations in FGIs; thematic analysis of transcribed data.

Main Results:

• Identified key unanswered questions and research topics from patient and relative perspectives.
• Established a collaborative approach involving diverse stakeholders in research priority setting.
• Contributed to a patient-centered research agenda for supportive care and rehabilitation in oncology.

Conclusions:

• Patient and public involvement is vital for setting relevant cancer research priorities.
• Focus group methodology effectively captured patient and relative experiences and needs.
• The study provides a foundation for patient-centered research in supportive care and rehabilitation for life-threatening cancers.