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Editorial

A home for patient-oriented research

Kirsten Patrick, Maryam Kebbe and Diane Aubin
CMAJ May 22, 2018 190 (20) E607; DOI: https://doi.org/10.1503/cmaj.180587
Kirsten Patrick
Deputy editor (Patrick), ; Department of Pediatrics (Kebbe), Faculty of Medicine & Dentistry, University of Alberta; School of Public Health (Aubin), University of Alberta, Edmonton, Alta.
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Maryam Kebbe
Deputy editor (Patrick), ; Department of Pediatrics (Kebbe), Faculty of Medicine & Dentistry, University of Alberta; School of Public Health (Aubin), University of Alberta, Edmonton, Alta.
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Diane Aubin
Deputy editor (Patrick), ; Department of Pediatrics (Kebbe), Faculty of Medicine & Dentistry, University of Alberta; School of Public Health (Aubin), University of Alberta, Edmonton, Alta.
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  • Tools to improve reporting of patient-oriented research
    Clayon B Hamilton, Alison M Hoens and Linda C Li
    Posted on: 14 June 2018
  • RE: A home for patient-oriented research
    Ken Biron
    Posted on: 04 June 2018
  • Posted on: (14 June 2018)
    Page navigation anchor for Tools to improve reporting of patient-oriented research
    Tools to improve reporting of patient-oriented research
    • Clayon B Hamilton, Postdoctoral Research Fellow, Arthritis Research Canada; Department of Physical Therapy, University of British Columbia
    • Other Contributors:
      • Alison M Hoens, Member of Arthritis Patient Advisory Board; Clinical Professor
      • Linda C Li, Senior Scientist; Professor

    Our collaborative research team commends CMAJ for launching the patient-oriented research collection in CMAJ Open.(1) Particularly, the specification for authors to report “how patients were engaged as part of the research team and how their contributions developed the work” is an opportunity to gather rich information about the role and function of patient partners.(1)

    At the recent Knowledge Translation (KT) Canada 2018 Scientific Meeting (https://ktcanada.org/event/kt-canada-scientific-meeting-2018/), there was ample discussion about the lack of guidelines to report patient engagement in research. We believe research articles should consistently provide detailed, yet concise information about the engagement of patients in research projects. Indeed such information, when gathered by systematic reviews, could inform methodology for best practices of patient-oriented research.

    An international effort has offered version two of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) checklist to facilitate standardization for studies to report patient and public engagement in research in publications.(2) Recognizing low-quality reporting of patient engagement in research, our research team has also recently published a framework outlining the core components for describing the processes of patient engagement.(3) Our framework complements the GRIPP2 and provides addi...

    Show More

    Our collaborative research team commends CMAJ for launching the patient-oriented research collection in CMAJ Open.(1) Particularly, the specification for authors to report “how patients were engaged as part of the research team and how their contributions developed the work” is an opportunity to gather rich information about the role and function of patient partners.(1)

    At the recent Knowledge Translation (KT) Canada 2018 Scientific Meeting (https://ktcanada.org/event/kt-canada-scientific-meeting-2018/), there was ample discussion about the lack of guidelines to report patient engagement in research. We believe research articles should consistently provide detailed, yet concise information about the engagement of patients in research projects. Indeed such information, when gathered by systematic reviews, could inform methodology for best practices of patient-oriented research.

    An international effort has offered version two of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) checklist to facilitate standardization for studies to report patient and public engagement in research in publications.(2) Recognizing low-quality reporting of patient engagement in research, our research team has also recently published a framework outlining the core components for describing the processes of patient engagement.(3) Our framework complements the GRIPP2 and provides additional guidance for authors to consider while reporting the details of patient engagement in research studies. As an example, for the methods section, the GRIPP2 recommends clear description of the engagement methods, whereas our framework provides possible scope and descriptors. Contributors to CMAJ Open could use these valuable tools when preparing their manuscript for the patient-oriented research collection.

    References
    1. Patrick K, Kebbe M, Aubin D. A home for patient-oriented research. Canadian Medical Association Journal. 2018;190(20):E607-E.
    2. Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ (Clinical research ed). 2017 Aug 02;358:j3453.
    3. Hamilton CB, Leese JC, Hoens AM, Li LC. Framework for Advancing the Reporting of Patient Engagement in Rheumatology Research Projects. Current Rheumatology Reports. 2017;19(7):38.

    Show Less
    Competing Interests: None declared.
  • Posted on: (4 June 2018)
    Page navigation anchor for RE: A home for patient-oriented research
    RE: A home for patient-oriented research
    • Ken Biron, Patent, Multiple Sclerosis in Canada

    As a patient with Multiple Sclerosis, I have been registered with an accredited international MS Research panel at https://www.narcoms.org since pre-2010. I realize you are focusing on all of disabling conditions. Would you be able to connect to these researchers focused on what must be the huge amount of data they collected for years across North America on Multiple Sclerosis to add it to your collection that is likely building? Will your collection be the same as theirs, quarterly surveys? Hope so, that is very efficient as far as I as a patent understand

    Competing Interests: None declared.
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Canadian Medical Association Journal: 190 (20)
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22 May 2018
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A home for patient-oriented research
Kirsten Patrick, Maryam Kebbe, Diane Aubin
CMAJ May 2018, 190 (20) E607; DOI: 10.1503/cmaj.180587

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A home for patient-oriented research
Kirsten Patrick, Maryam Kebbe, Diane Aubin
CMAJ May 2018, 190 (20) E607; DOI: 10.1503/cmaj.180587
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