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

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Patient involvement in research priorities (PIRE) : a study protocol. / Piil, Karin; Jarden, Mary.

In: B M J Open, Vol. 6, No. 5, e010615, 2016, p. 1-6.

Research output: Contribution to journalJournal articleResearchpeer-review

Harvard

Piil, K & Jarden, M 2016, 'Patient involvement in research priorities (PIRE): a study protocol', B M J Open, vol. 6, no. 5, e010615, pp. 1-6. https://doi.org/10.1136/bmjopen-2015-010615

APA

Piil, K., & Jarden, M. (2016). Patient involvement in research priorities (PIRE): a study protocol. B M J Open, 6(5), 1-6. [e010615]. https://doi.org/10.1136/bmjopen-2015-010615

Vancouver

Piil K, Jarden M. Patient involvement in research priorities (PIRE): a study protocol. B M J Open. 2016;6(5):1-6. e010615. https://doi.org/10.1136/bmjopen-2015-010615

Author

Piil, Karin ; Jarden, Mary. / Patient involvement in research priorities (PIRE) : a study protocol. In: B M J Open. 2016 ; Vol. 6, No. 5. pp. 1-6.

Bibtex

@article{525bbda0980d4ad7be46a72fe2b6b1d2,
title = "Patient involvement in research priorities (PIRE): a study protocol",
abstract = "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.",
keywords = "NEUROSURGERY, ONCOLOGY, QUALITATIVE RESEARCH",
author = "Karin Piil and Mary Jarden",
year = "2016",
doi = "10.1136/bmjopen-2015-010615",
language = "English",
volume = "6",
pages = "1--6",
journal = "B M J Open",
issn = "2044-6055",
publisher = "BMJ Publishing Group",
number = "5",

}

RIS

TY - JOUR

T1 - Patient involvement in research priorities (PIRE)

T2 - a study protocol

AU - Piil, Karin

AU - Jarden, Mary

PY - 2016

Y1 - 2016

N2 - 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.

AB - 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.

KW - NEUROSURGERY

KW - ONCOLOGY

KW - QUALITATIVE RESEARCH

U2 - 10.1136/bmjopen-2015-010615

DO - 10.1136/bmjopen-2015-010615

M3 - Journal article

C2 - 27221126

VL - 6

SP - 1

EP - 6

JO - B M J Open

JF - B M J Open

SN - 2044-6055

IS - 5

M1 - e010615

ER -

ID: 164110351