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

Research output: Contribution to journalJournal articleResearchpeer-review

Karin Piil, Mary Jarden

Introduction: Patient involvement in healthcare has expanded from the clinical practice setting to include collaboration during the research process. There has been a growing international interest in patient and public involvement in setting research priorities to reduce the risk of discrepancy between what patients with cancer and their relatives experience as important unanswered questions and those which are actually researched. This study aims to challenge the conventional research process by inviting patients with life-threatening cancer (primary malignant brain tumours or acute leukaemia), relatives and patient organisations to join forces with clinical specialists and researchers to identify, discuss and prioritise supportive care and rehabilitation issues in future research.

Methods and analysis: This is an exploratory qualitative study comprising two sets of three focus group interviews (FGIs): one set for primary malignant brain tumours and the other for acute leukaemia. Separate FGIs will be carried out with patients and relatives including representation from patient organisations and clinical specialists to identify important unanswered questions and research topics within each group. The FGIs will be video/audio recorded, transcribed and thematically analysed. This study will contribute to a patient-centred research agenda that captures issues that patients, their relatives, clinical specialists and researchers consider important.

Ethics and dissemination: The study is registered at the Danish Data Protection Agency (number: 2012-58-0004) and the Scientific Ethics Review Committee of the Capital Region of Denmark (number: H-15001485). Papers will be published describing the methods applied and the supportive care and rehabilitation issues that are identified as important for future research.

Trial registration number ISRCTN57131943; Pre-results.
Original languageEnglish
Article numbere010615
JournalB M J Open
Volume6
Issue number5
Pages (from-to)1-6
Number of pages6
ISSN2044-6055
DOIs
Publication statusPublished - 2016

    Research areas

  • NEUROSURGERY, ONCOLOGY, QUALITATIVE RESEARCH

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