Can-SOLVE CKD Webinar | January 25, 2017

State of the Network

Dr. Adeera Levin & Dr. Braden Manns, Co-Principal Investigators Ms. Kate Chong, Co-chair of Patient Council Ms. Mary Beaucage, Member of the Indigenous Peoples’ Engagement & Research Council

Overview • Network accomplishments • Current status of projects

o Study protocols

o Knowledge translation

o Patient engagement

• Patient engagement survey results • Patient Council & IPERC updates • Q&A

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Network Accomplishments Since our successful grant application, we have:

• Established a robust governance structure o Patient Council / Indigenous Peoples’ Engagement and

Research Council o Committees and working groups o Expert advisory bodies (ROC, CIRAC)

• Formed partnerships with >30 organizations o Provincial kidney care agencies, universities, charitable

foundations, research institutes, industry, private donors 3

• Submitted a detailed work plan to CIHR

• Built a core operations team to support network activities

• Launched a website and other communication materials in both English and French

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Network Accomplishments

• Coordinated patient-oriented research training for nearly 60 network members o patient partners, researchers, policy-makers

• Completed funding agreements with four host

institutions o University of Alberta, University of Calgary, London Health

Sciences Centre, Hamilton Health Sciences o Funds released to 8 research projects and 4 core infrastructures

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Network Accomplishments

Study Protocols

• Project leads asked to submit ethics-ready protocols by Jan. 16 (early to launch projects) o 8 protocols received to date o Some projects launching later (i.e., Year 2)

• Next steps:

o Protocols will be reviewed by Can-SOLVE CKD Research Operations Committee

o Funds released to project teams after ROC approval

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• Formal survey of all project leads conducted re: KT knowledge and KT needs

• KT plans submitted by ~75% of projects

• Plans will be reviewed by Knowledge User & Translation Committee at Feb. 17 in-person meeting

• iKT Laboratory supporting creation of tools to inform health care decision-making

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Knowledge Translation

• Projects are at different stages of readiness o Some working actively with patient partners, some still

identifying patient leads

• Operations team working to understand status of patient engagement, successes and barriers o Check-in phone calls o Survey of patient partners and project leads

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Patient Engagement

• Purpose: understand progress in patient engagement activity to ultimately enhance researcher-patient partnership o Developed in response to feedback and concerns raised

• Brief survey sent to project leads and Patient Council members o Contact made with patient partners o Patient input in study protocol o Patient lead in research projects: roles and responsibilities

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Patient Engagement Survey: Background

• Responses received: o 15 of 18 projects o 40% of Patient Council members

• Almost all projects have contacted and met with patient partners • 7 of the 15 projects have patient partners who have contributed to

study protocol development • 6 projects with patient leads identified: specific roles and

responsibilities have yet to be defined • Responses to be reviewed in more detail to identify and bridge

gaps

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Patient Engagement Survey: Interim Results

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Patient Council: Formation and Foundation Building

• Recruitment of patient partners • Patient engagement check-in calls • Patient leads • Requests from research projects

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Patient Council: Supporting the Research Projects

• Goal setting for Year 2 • Participant questionnaire • Patient partner recruitment and orientation • Capture of patient partners’ roles and responsibilities

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Patient Council: Next Steps

• Met with members of other SPOR networks in Winnipeg to discuss co-development of: o Guidelines for cultural safety o Curriculum reflecting Indigenous involvement/experience

• IPERC members developing Indigenous wellness manual

• Teleconference in December advanced work plans for wellness manual and Indigenous curriculum o Seeking volunteers interested in working on these initiatives

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Indigenous Peoples’ Engagement & Research Council (IPERC)

• Members of IPERC met with leads on Indigenous projects at Calgary training session o Focus on logistics, planning, and training needs

• Upcoming IPERC meeting will focus on research projects o Please call or email Cathy Woods if you have not been

contacted by your specific project

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Indigenous Peoples’ Engagement & Research Council (IPERC)

Questions?

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Next webinar

Defining CKD risk in youth with diabetes: AdDIT & iCARE studies Wednesday, February 8 4:00pm PST / 5:00pm MST / 6:00pm CST / 7:00pm EST 8:00pm AST / 8:30pm NST

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Stay in touch!

cansolveckd.ca (English) fr.cansolveckd.ca (Français)

info@cansolveckd.ca

facebook.com/cansolveckd

@cansolveckd

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