The Creation of a Tool to Measure Engagement in Patient-Oriented Research

Keller, Malori; Plishka, Christopher; King, Malcolm; Gunderson, Janet; Stobart, Christine; Dunn, Kate M.; Haver, Charlene

doi:10.12927/hcq.2020.26141

Cited by 3 publications

(3 citation statements)

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“…We will use the Patient-Oriented Research Level of Engagement Tool 28 to measure the extent to which our survey meets the definition of patient-oriented research. 28 We will use the short version of the Patient Engagement In Research Scale 29 to measure the patients’ perspective of the quality if their engagement. 30 The GRIPP2-short form reporting checklist will guide our reporting of patient contributions in the future publications.…”

Section: Methods and Analysismentioning

confidence: 99%

“…We will report two measures of patient engagement. We will use the Patient-Oriented Research Level of Engagement Tool28 to measure the extent to which our survey meets the definition of patient-oriented research 28. We will use the short version of the Patient Engagement In Research Scale29 to measure the patients’ perspective of the quality if their engagement 30.…”

Section: Methods and Analysismentioning

confidence: 99%

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Decisional needs assessment for patient-centred pain care in Canada: the DECIDE-PAIN study protocol

et al. 2023

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IntroductionThe 2021 Action Plan for Pain from the Canadian Pain Task Force advocates for patient-centred pain care at all levels of healthcare across provinces. Shared decision-making is the crux of patient-centred care. Implementing the action plan will require innovative shared decision-making interventions, specifically following the disruption of chronic pain care during the COVID-19 pandemic. The first step in this endeavour is to assess current decisional needs (ie, decisions most important to them) of Canadians with chronic pain across their care pathways.Methods and analysisDesignGrounded in patient-oriented research approaches, we will perform an online population-based survey across the ten Canadian provinces. We will report methods and data following the CROSS reporting guidelines.SamplingThe Léger Marketing company will administer the online population-based survey to its representative panel of 500 000 Canadians to recruit 1646 adults (age ≥18 years old) with chronic pain according to the definition by the International Association for the Study of Pain (eg, pain ≥12 weeks).ContentBased on the Ottawa Decision Support Framework, the self-administered survey has been codesigned with patients and contain six core domains: (1) healthcare services, consultation and postpandemic needs, (2) difficult decisions experienced, (3) decisional conflict, (4) decisional regret, (5) decisional needs and (6) sociodemographic characteristics. We will use several strategies such as random sampling to improve survey quality.AnalysisWe will perform descriptive statistical analysis. We will identify factors associated with clinically significant decisional conflict and decision regret using multivariate analyses.Ethics and disseminationEthics was approved by the Research Ethics Board at the Research Centre of the Centre Hospitalier Universitaire de Sherbrooke (project #2022-4645). We will codesign knowledge mobilisation products with research patient partners (eg, graphical summaries and videos). Results will be disseminated via peer-reviewed journals and national and international conferences to inform the development of innovative shared decision-making interventions for Canadians with chronic pain.

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Section: Methods and Analysismentioning

confidence: 99%

Section: Methods and Analysismentioning

confidence: 99%

Decisional needs assessment for patient-centred pain care in Canada: the DECIDE-PAIN study protocol

et al. 2023

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“…The effectiveness of Saskatchewan PFAs is not the only attribute evident in the article by Keller et al (2020), which describes the advisors' initiative in co-developing better POR tools with the SCPOR. The PFAs identified a weakness in how POR grant proposals were being assessed, prompting them to initiate a project to give the process more rigour -and clear criteria to determine what did or didn't make a proposal sufficiently patient oriented.…”

Section: Patient-oriented Researchmentioning

confidence: 99%

From the Editors

2020

hcq

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N ew ways and means of planning, delivering and improving healthcare are in place and in play across Canada, and novel opportunities for change beckon. At the same time, long-standing systemic problems are not yet dislodged -despite many works-in-progress on discrete fronts -and troubling disparities persist. The articles in this issue of Healthcare Quarterly speak to all of these realities.Readers learn how healthcare organizations are exploring and using advanced analytics and artificial intelligence (AI) to improve care; how health researchers are widening their circles to bring in and benefit from the experience and expertise of patients and caregivers; and how performance and accountability in cancer care progressed over the years.Red flags appear as well: Kathy Lee and her colleagues (2020) track a continuing upward trend in spending increases on public drug programs ($34.3 billion forecast for 2019, a 2.7% increase since 2018); the reporting rate of adverse drug reactions (ADRs) has increased four-fold over nine years; the confounding challenge of prolonged hospital stays exerts multiple ill effects; and ICES describes daunting disparities in health status and healthcare access between the general population and people who experience imprisonment in Ontario (Kouyoumdjian et al. 2020).Healthcare operates within an environment of finite resources and growing demand for more and new services, which often leads to trade-offs and recalibration. What principles should guide decision making and determine whether today's imperatives should be augmented, replaced, retained, reweighted or removed? What characteristics and capabilities must healthcare systems possess to meet the needs of Canadians in the second decade of the 21st century?Given the multifaceted and complex entity that is Canadian healthcare, the way forward will require concerted and coordinated efforts, targeted resources and continued stewardship, along with an infusion of skills and knowledge, more time and tenacity and the elixir of courage and vision.

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Conducting Patient Oriented Research (POR) in a Forensic Psychiatric Facility: A Case Study of Patient Involvement

Dell

Williamson

McKenzie

et al. 2023

International Journal of Forensic Mental Health

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Patient oriented research (POR) is new to the healthcare research landscape in Canada and has not yet been applied to the forensic field. This review begins by introducing POR, the POR Level of Engagement Tool, and complimentary approaches used in research with forensic patients. Next, the potential key challenges, paradoxes, and benefits of applying POR to a forensic mental health setting are presented. Drawing on this understanding, a review of our team's experiences applying the POR Level of Engagement Tool at the Regional Psychiatric Center, a Canadian forensic psychiatric facility, is presented as a case study. The research question supported by our patient advisors and addressed with patients and facility staff was: "What topics do you think we need to know more about to benefit patients at the Regional Psychiatric Center?" We conclude this review article with recommendations on how to meaningfully, and practically, involve forensic psychiatric patients diagnosed with mental disorders in POR when initiating a project. Forensic psychiatric patients can provide insightful knowledge based on their experiences of mental illness to improve the prison health care system and practices.

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The Creation of a Tool to Measure Engagement in Patient-Oriented Research

Cited by 3 publications

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Decisional needs assessment for patient-centred pain care in Canada: the DECIDE-PAIN study protocol

Decisional needs assessment for patient-centred pain care in Canada: the DECIDE-PAIN study protocol

From the Editors

Conducting Patient Oriented Research (POR) in a Forensic Psychiatric Facility: A Case Study of Patient Involvement

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