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What is a Priority Setting Partnership (PSP)?
Priority Setting Partnerships (PSPs) enable clinicians, patients and carers to work together to identify and prioritize evidence uncertainties in particular areas of health and care that could be answered by research. While the James Lind Alliance (JLA) facilitates these partnerships, the funding and organizing is done by the PSP itself.
Focusing on specific conditions or healthcare settings, the JLA facilitates PSPs which:
- bring patient, carer and clinician groups together on an equal footing
- identify evidence uncertainties (questions which cannot be answered by existing research) which are important to all groups
- work with all groups to jointly prioritize identified uncertainties
- produce a final list (often a Top 10) of jointly agreed research priorities, publicize them widely, and make sure that other uncertainties are recorded and available for researchers and research funders to access
- provide a rare and valuable opportunity for patients and clinicians to shape the health research agenda.
What is the purpose of the RRC PSP?
At our first annual knowledge translation event in May 2019, we invited patients and caregivers to an all-day event where they would have the opportunity to engage with respirologists and lung health professionals to have their questions answered. The feedback at that event was overwhelmingly positive and, requests for future KT activities identified obstructive sleep apnea (OSA) as the desired area of focus.
We recognize that OSA has a high prevalence here in Canada and, despite the prevalence of OSA, it remains an under-diagnosed public health concern. Untreated OSA has been associated with increased utilization of health care, reduced work performance (absence from work and lost productivity, workplace errors, costs of illness-related accidents), and increased occupational and motor vehicle accidents. Furthermore, while established diagnostic and therapeutic modalities are available, patient adherence to treatments such as Continuous Positive Airway Pressure (CPAP) can be as low as 50% over the course of a year, largely as a result of patient discomfort. There have been calls for increased understanding of the role of psychosocial variables in treatment adherence.
The objective of our PSP is to identify unanswered questions about adult obstructive sleep apnea with regards to treatment, self-management and adherence.
Our Steering Group
The Obstructive Sleep Apnea (OSA) Steering Group is comprised of an engaged group of clinicians, patients, caregivers and community stakeholders all with an interest in addressing the treatment issues related to OSA. The steering group is responsible for ensuring representation of kep groups and issues surrounding OSA and meets bi-monthly to discuss such activities as data collection, community engagement and strategies for promoting inclusivity.
Katherine Cowan - JLA Advisor
Dr. Donna Goodridge - Director, Respiratory Research Centre & JLA Chair
Dr. Robert Skomro - Respirologist
Dr. Mark Fenton - Respirologist
Candace Skrapek - Patient & Family Advisor
Karen Webb - Patient & Family Advisor
Bill Hails - Patient & Family Advisor
Bill Schaffel - Patient & Family Advisor
Dave Parkalub - Patient & Family Advisor (Lung Association of Saskatchewan)
Kendra Ulmer, RN - Clinician (Canadian Centre for Health & Safety in Agriculture)
Jaimie Peters, RN - Lung Association of Saskatchewan
Dawn Demchenko, RN - LiveWell Chronic Disease Management
Myrna Briggs - Patient & Family Advisor
Andre Letendre - Cultural Systems Advisor, Saskatchewan Health Authority
Sarah Fang - Saskatchewan Centre for Patient Oriented Research - JLA Co-Lead
Britney Duncan - Respiratory Research Centre - JLA Coordinator