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Welcome!
• This webinar will be recorded.
• Your microphone and camera will be turned off for the duration of the
webinar.
• To ensure accessibility, live captions can be enabled from the control
panel.
October 20, 2021
Presenters: Andrea Tricco Maureen Smith
Maureen Dobbins Amanda Doherty-Kirby
Sarah Neil-Sztramko Abu Dukuly
Facilitator: Emily Clark
Engaging Public and Patient Partners in Rapid Reviews
Housekeeping
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send a private message to Alanna Miller
• Use the Q&A and chat to post questions
and/or comments throughout the webinar
• Post your questions in the Q&A
• Send questions about technical difficulties in a
private chat to Alanna Miller
• Polling
After Today
After the webinar, access the recording (in English) at
www.youtube.com/nccmt and slides in English and French at
www.slideshare.net/NCCMT/presentations.
Pre-webinar Polling Questions
1.How many people are watching today’s session with you?
A) Just Me
B) 2-3
C) 4-5
D) 6-10
E) >10
2. Have you visited the National Collaborating Centre for Methods and Tools’ website or used its resources before?
A) Yes
B) No
3. If you stated YES on the previous question, how many times have you used the NCCMT’s resources?
A) Once
B) 2-3 times
C) 4-10 times
D) 10+ times
Presenters
Maureen Dobbins
National Collaborating Centre
for Methods and Tools
(NCCMT)
Sarah Neil-Sztramko
National Collaborating Centre
for Methods and Tools
(NCCMT)
Andrea Tricco
Strategy for Patient-Oriented
Research (SPOR) Evidence
Alliance
Maureen Smith
Patient/Public Partner; Chair,
Cochrane’s Consumer
Network Executive
Amanda Doherty-Kirby
Citizen Member, COVID-END
and SPOR-Evidence Alliance
Abu Dukuly
Citizen Member, COVID-END
and SPOR-Evidence Alliance
Rapid Evidence Service
• Urgent and ongoing need for synthesized evidence; little to no
capacity among front line public health service delivery organizations
• Pivot from synthesis training and support to conducting evidence
syntheses
• Response to public health decision makers’ requests for evidence on
priority public health questions
Methods: Rapid Evidence Service
• NCCMT prioritizes questions from
received requests
• Modified steps from the NCCMT Rapid
Review Guidebook
• “Relay race”
• Reviews completed within 5-10+ days
1. Define the
question
2. Search for
research
evidence
3. Critically
appraise
4. Synthesize
the evidence
5. Identify
applicability
and
transferability
issues
Receive and prioritize questions
• Questions from federal, provincial/territorial, local organizations + international
• Weekly team meeting
• Assess progress on current reviews
• Assess capacity to start new reviews
• Prioritization
• Avoid duplication
• COVID-END
• Urgency/relevance of question to Canadian context
• Content expertise in house to address question
• Availability of useful evidence
Formulate Question
• PICO or PS (where possible)
• Collaboration with requestor
and patient and public
partners when possible
• Used to set
inclusion/exclusion criteria
Critical appraisal
• Completed by one NCCMT reviewer, verified by a second
• Conflicts resolved through discussion, input from review lead as needed
• A variety of appraisal tools are used depending on design
• AMSTAR 1 (Systematic Reviews)
• AGREE II (Guidelines)
• Joanna Briggs Institute Checklists for all other designs
• Each study rated as strong, moderate, low quality
GRADE
• Grading of Recommendations, Assessment, Development, and Evaluation
• How likely are the findings to change with more evidence?
• Used to assess certainty of findings based on eight domains (Review Lead)
• Risk of bias (quality assessment)
• Inconsistency of effects
• Indirectness of interventions/outcomes
• Imprecision in effect estimate
• Publication bias
• Magnitude of effect
• Dose-response relationship
• Accounting for confounding
• Certainty of findings rated as: very low, low, moderate, strong
Final Product
• Question
• Executive Summary
• Key findings and certainty
• What has changed (update)
• Overview of evidence and knowledge gaps
• Methods
• Results
• Tables
Executive Summary
• Background:
• 1-2 paragraphs
• Key Points:
• 3-5 main themes linked to
certainty (GRADE)
• Overview of evidence and
knowledge gaps
• 3-5 statements on state of the
evidence and major gaps (ie
equity issues)
For Updates:
• 4th paragraph: RE what has
changed since previous version
Key Questions from NCCMT
• How to meaningfully engage patient and public partners with very
tight/changing deadlines
• Process
• Most important steps
• How to appropriately incorporate patient and public partners’ input
into executive summary
• What other things can we do to ensure patient and public partners
feel supported and empowered to participate meaningfully
Presenters
Maureen Dobbins
National Collaborating Centre
for Methods and Tools
(NCCMT)
Sarah Neil-Sztramko
National Collaborating Centre
for Methods and Tools
(NCCMT)
Andrea Tricco
Strategy for Patient-Oriented
Research (SPOR) Evidence
Alliance
Maureen Smith
Patient/Public Partner; Chair,
Cochrane’s Consumer
Network Executive
Amanda Doherty-Kirby
Citizen Member, COVID-END
and SPOR-Evidence Alliance
Abu Dukuly
Citizen Member, COVID-END
and SPOR-Evidence Alliance
Partnering with citizens
in COVID-END evidence syntheses:
Reflections from a patient/public
perspective!
Maureen Smith
Co-Lead
COVID-END Citizen Partnership
19 October 2021
COVID-END Citizen Partnership: Why?
§ Many COVID-19 research topics are relevant to citizens (e.g. public
health measures, vaccines, societal/economic impacts, etc.) thus
engaging them is essential.
§ Citizens are decision-makers! They are making personal decisions that
have tremendous societal impacts.
§ Citizens can help shape research to be more responsive to the needs
of Canadians (e.g., focus on their priorities and relevant outcomes)
§ Citizens have unique knowledge that can help to interpret and
contextualize research evidence
Why engage patients & citizens
in COVID-19 evidence synthesis?
And especially rapid evidence synthesis!
§ Evidence synthesis is the backbone of policy decisions,
clinical guidelines, good practices, etc. We are the end-
users!
§ Patients and citizens should be engaged in:
§ Prioritizing rapid review topics
§ Framing the questions and have input on outcomes
§ Interpreting the findings to make them relevant
§ Accessing the results in plain language
20
21
Rapid reviews: challenges & solutions
Challenges Solutions
§ Quick turnaround and tight
timelines. Some projects are
completed within 5-10 business
days
§ Be clear about the timelines so that
patient/public partners can decide if
they can commit to this schedule
§ Not enough time to train
researchers and patient/citizen
partners on how to meaningfully
collaborate
§ We’re offering training and resources
for researchers and patient/citizen
partners. 23 people took a 10-hour
rapid review course for patient/citizen
partners!
§ Difficult to build relationship with
rapid projects
§ Patient/citizen partners understand
the COVID reality and the impact this
has on engagement. Agree on roles
and responsibilities from the onset of
your collaboration.
A pool of citizens ready to partner with you
§ 20 citizens recruited from 80 applicants, aiming for diversity:
q age
q gender
q socio-economic status
q ethnocultural
q geographical (e.g., across Canada, rural/urban/remote areas)
q lived experiences (e.g., had COVID, immunocompromised, living with other health
conditions, economic, school age children, work with refugees, etc.)
Patient/Public Partner Engagement
on Rapid Reviews
§ To improve patient partner engagement on research projects, namely rapid
reviews, the SPOR Evidence Alliance partnered with patient partners
Maureen Smith and Janet Gunderson to co-develop the Patient Partner
Panel for Rapid Reviews training program
§ Vision: To facilitate meaningful and valuable patient-researcher collaboration in rapid review projects.
§ Purpose
q Present a basic understanding of knowledge synthesis and rapid reviews to ensure that public/patient partners can
provide feedback and collaborate meaningfully in rapid review projects.
q To efficiently on-board patient partners to various rapid review projects conducted or administered through the SPOR
Evidence Alliance and our collaborators.
q To improve the overall collaborative experiences for both patient partners and researchers working together on rapid
review projects.
q To minimize barriers to successful collaboration associated with the rapid nature of these research projects.
23 patient/public partners completed the training program in May 2021.
23
Citizen engagement request reform
for researchers
Appreciation policy
§ Based on SPOR Evidence Alliance co-
produced guidelines
q A form will be provided to keep track
of citizen partners’ hours
(preparation time and meeting time)
Source: https://sporevidencealliance.ca/wp-
content/uploads/2020/10/SPOR-EA_Patient-Partner-Appreciation-Policy-
and-Procedure_2020.pdf
Presenters
Maureen Dobbins
National Collaborating Centre
for Methods and Tools
(NCCMT)
Sarah Neil-Sztramko
National Collaborating Centre
for Methods and Tools
(NCCMT)
Andrea Tricco
Strategy for Patient-Oriented
Research (SPOR) Evidence
Alliance
Maureen Smith
Patient/Public Partner; Chair,
Cochrane’s Consumer
Network Executive
Amanda Doherty-Kirby
Citizen Member, COVID-END
and SPOR-Evidence Alliance
Abu Dukuly
Citizen Member, COVID-END
and SPOR-Evidence Alliance
Patient Engagement in the SPOR Evidence Alliance
Andrea Tricco PhD, MSc
Director & Scientist, Knowledge Synthesis Team, Knowledge
Translation Program, Li Ka Shing Knowledge Institute, St. Michael’s
Hospital, Unity Health Toronto
Associate Professor, Dalla Lana School of Public Health & Institute of
Health Policy, Management, and Evaluation, University of Toronto
Co-Director & Adjunct Associate Professor, Queen's Collaboration for
Health Care Quality Joanna Briggs Institute Centre of Excellence,
Queen’s University
Twitter: @ATricco
Acknowledgement of Traditional Land
We wish to acknowledge the land on which the Central Coordinating Office of the SPOR Evidence
Alliance operates. The central office is located on land now known as Tkaronto (Toronto). Tkaronto
is the traditional territory of many groups, including the Mississaugas of the Credit and the
Chippewa/ Ojibwe of the Anishnaabe Nations; the Haudenosaunee, and the Wendat. It is now
home to many diverse First Nations, Inuit and Métis peoples. We also acknowledge that Tkaronto
is covered by Treaty 13 with the Mississaugas of the Credit and The Dish with One Spoon treaty
between the Anishinaabe, Mississaugas and Haudenosaunee that connected them to share the
territory and protect the land. All Indigenous Nations and peoples, Europeans and newcomers,
have been invited into this treaty in the spirit of peace, friendship and respect.
We would like to honour the Elders and Knowledge Keepers, both past and present, and are
committed to continuing to learn and respect the history and culture of the communities that
have come before and presently reside here.
We acknowledge the harms of the past and present, and we dedicate ourselves to work with and
listen to First Nations, Inuit and Métis communities in the spirit of reconciliation and partnership.
We recognize and are grateful to have this opportunity to work on this land, and commit to caring
for this land and continuously and actively working towards reconciliation. We recognize that
Indigenous practices of health and well-being have been in place in this territory for over 10,000
years and are maintained to this day.
2
Conflicts of Interest
3
§ Financial competing interests: I declare no financial competing
interests
§ Academic competing interests: I hold a Tier 2 Canada Research
Chair in knowledge synthesis and several grants to advance the
science of knowledge synthesis
§ Other competing interests: I receive a small stipend as an
Associate Editor for the Journal of Clinical Epidemiology, am unpaid
Associated Editor for Systematic Reviews, and sit on the Editorial
Board as an unpaid member for the BMC Medicine and JBI Evidence
Synthesis journals
About the Strategy for
Patient-Oriented Research
(SPOR) Evidence Alliance
4
Inception of the SPOR Evidence Alliance
CIHR releases the Strategy document of SPOR
2011
§ Noted gaps in the production of knowledge synthesis and in the
development, dissemination and uptake of clinical practice guidelines
CIHR releases funding opportunity
2016
§ 175 researchers, trainees, patients and health system decision-
makers from across Canada joined together to form the SPOR
Evidence Alliance
SPOR Evidence Alliance is funded
2017
§ SPOR Evidence Alliance received $5 million funding for a 5-year
period and are currently in our fourth year of full operation
5
What We Do
6
KEY ACTIVITIES
Knowledge
Synthesis
Clinical Practice
Guidelines
Knowledge
Translation
Research Query Services
We have researchers across Canada with
diverse expertise who can respond to
decision-maker research needs
Training and Skills Development
We offer a range of courses and workshops
to support and grow researchers and
decision-makers who use research findings
Ideas and Innovation
We promote and advance the use of
scientific knowledge
We Welcome Patient Partners, Researchers, Trainees,
and Knowledge Users from Across Canada and Beyond
Decision-
makers
17%
Patients
and Public
11%
Researchers
55%
Trainees
18%
MEMBERS (N=348)
7
Research Trainees are
graduate students or post-
doctoral fellows who work
under the formal supervision of
an independent researcher
Decision-makers are
individuals using research
findings to make informed
decisions about health practice
and policy changes
Patients and Public includes
informal caregivers such as
family and friends and
individuals with personal
experience of a health issue
Researchers are individuals
with a full-time, independent
research appointment at an
academic or research
institution (e.g., scientist)
Membership registration is free:
https://sporevidencealliance.ca/get-involved/become-an-alliance-member/
8
§ The SPOR Evidence Alliance works with the decision-maker to refine the scope
of the query and ensure it is tailored to their needs
§ A researcher with relevant expertise is nominated to address the query
§ Decision-makers are integrated throughout the research process
Research Team
Ongoing collaboration
& engagement
Decision-makers
Online submission
Query
Intake
Research
Needs
&
Conduct
We Provide Research Services to Decision-makers,
Including Patient Partners
Decision-makers
Knowledge
Products
§ Knowledge products, tools and dissemination activities are tailored
to decision-maker needs
§ Decision-makers can submit queries on knowledge synthesis, guideline
development, and/or knowledge translation using a web-based form
9
Research Query Services: Progress To Date
Goal: To respond to 100 queries from decision-makers over the duration of
the 5-year CIHR funding period
135 queries
received to date
Addressed
(n=79)
In Progress
(n=31)
Ineligible/Withdrawn
(n=23)
Pending Prioritization/
Topic Refinement
(n=2)
194 decision-makers, 180 patient partners, and 95 trainees were engaged
Our Research Teams
10
A total of 18
research teams
from across
Canada have
led a project
BC: 3 (16.7%)
MB: 1 (5.6%)
NL: 2 (11.1%)
NS: 2 (11.1%)
NT: 1 (5.6%)
ON: 5 (27.6%)
QC: 4 (22.2%)
We Respond to Research Questions from Decision-makers,
and Patient and Public Partners
§ Research queries were
submitted by 45
different organizations
whose reach was:
o Provincial (n=23)
o National (n=20)
o International (n=2)
§ 3 patient-submitted
topics have been
selected from a pool
of 11 received
o The selection process
was undertaken by
our Patient Topic
Prioritization Panel
(n=22 members)
11
Government
56%
Guideline
Developer
8%
Health system
manager
5%
Multinational
Health Agency
12%
Health
Professional
College/Health
care provider
9%
Patient/Public Partner
3%
Health Advocacy Group
1%
SPOR entities
6%
We Respond to COVID-19-Related Research Requests
§ We respond to
urgent requests from
decision-makers for
information on
COVID-19
§ These requests have
rapid timelines, with
turnaround of as little
as 5-10 business
days
§ We engage 1-2
patient partners in
each query
12
https://sporevidencealliance.ca/key-activities/covid-19-evidence-synthesis/
§ To date, 37 requests have been completed
or are in progress
§ COVID-19-related project information is
posted to our website
We Use and Promote the Principles of Open Science and
Encourage Publication by Patient Partners
13
§ Goal: To produce 100 knowledge user products over the funding period
§ To date our research query services have produced a number of
knowledge products such as peer-reviewed journal publications, reports,
and other publications (e.g., protocols, research briefs, plain language
summaries)
Peer-reviewed
Publications
40
Reports
Delivered
85
Other Knowledge
Products
48
§ We submitted a series of 4 papers on the SPOR Evidence Alliance to the
FACETS journal including patient partners as co-authors on each one
We Provide Capacity Building Opportunities to Trainees and
Patient Partners
§ Goal: To train 50 early career researchers and more than 200
graduate/post-graduate trainees over the funding period
§ To date:
o 1,970 learners have taken part in 111 learning opportunities developed or co-
developed by the SPOR Evidence Alliance
o 24 patient partners have been trained on rapid reviews through our Patient
Partner Panel for Rapid Reviews Training Program
o 6 trainees (doctoral or post-doctoral students) have been the
recipients of $10,000 each for their novel research projects
through our annual Seed Grant funding opportunity (45
applications received over 2 years)
● Learn more about the Seed Grant recipients’ projects here:
https://sporevidencealliance.ca/key-activities/advancing-science/
14
We Work with Indigenous Populations
§ We have a strong commitment toward Indigenous Peoples’ engagement in
research, and have undertaken several research projects within this priority
area:
15
Project Title Research Leads
Exploring Strategies to Reduce Family Violence in the Northwest Territories: A Scoping Review Dr. Pertice Moffitt
Community Wisdom: Creating a Comprehensive Approach to End Family Violence in the Northwest
Territories
Dr. Pertice Moffitt
Engaging Métis Citizens in Manitoba in the Development of Child Health Resources Ms. Lisa Knisley Jones
Shared Decision-Making Tools and Approaches to Support/Enhance Participation of Indigenous
People in Health Decisions
Dr. Janet Jull
Explore cervical cancer screening interventions that can enable community members to do self-
screening
Dr. Janet Jull
Conducting Knowledge Synthesis Following Indigenous Ways of Knowing and Doing Dr. Janet Jull
Exploring Traditional Healers’ Roles and Experiences in Dementia Care for Indigenous Populations Dr. Jennifer Walker
Colorectal Cancer Screening
Dr. Jill Tinmouth and Dr.
Janet Jull
We Work with Patient and Public Partners
§ We engage with patient partners, caregivers, and
members of the public in all our activities
16
Number of patient partners in governance 13
Ø Number of committees with patient partners co-chairs 3
Number of policies co-developed with patient partners 2
Number of patient partners peer reviewers across 2 seed grant
opportunities
14
Number of research queries submitted by patient partners 11
Ø Number of patient-submitted topics prioritized for further study
(with patient partners as co-leads)
3
Number of patient partners participating in the Patient Partner Panel
for Rapid Reviews (co-developed with 2 patient partners)
24
Patient and Public
Engagement in Rapid
Reviews
17
Patient Engagement Resources
§ The SPOR Evidence Alliance has developed a
guidance document to support researchers in
engaging patient and public members as partners
in research
§ The document includes tips on:
o How and when to meaningfully engage patient and
public partners
o Budgeting for patient and public engagement
● SPOR Evidence Alliance Patient Partner Appreciation
Policy and Procedure (available from
https://sporevidencealliance.ca/about/policies-procedures/)
o Links to planning, communication and evaluation
resources
§ Also see our Rapid Reviews Methods Guidance
resource
o This includes tips on engaging patients and the public
as partners in rapid reviews
o Available from https://sporevidencealliance.ca/wp-
content/uploads/2021/08/6.-SPOREA-
COVIDEND_Rapid-Review-Resources.pdf
18
https://sporevidencealliance.ca/wp-content/uploads/2021/08/7.-SPOREA-
COVIDEND_Patient-and-Public-Engagement-for-Researchers.pdf
Patient Engagement - Lessons Learned
Provide training
§ Both researcher and patient/public members on the
team will need training
§ Engage more than 1 patient or public partner
o 2-3 patient or public partners will provide
different insights and help support each other
Start early
§ The earlier patients and public partners are engaged
in the project, the more they will know about the
project and be able to effectively contribute
Budget
§ Provide fair compensation to patient and public
partners, reimburse for meeting and travel related
expenses, etc.
o Use the Patient Partner Appreciation Policy and
Protocol co-developed by patients
(https://sporevidencealliance.ca/about/policies-
procedures/)
19
Create a positive, inclusive environment
§ Be curious, enthusiastic, open and genuine
§ Share experiences, information and ideas
§ Listen actively, invite others to talk and be respectful
when there are differing opinions
§ Co-produce knowledge products and acknowledge
contributions (e.g., name patient partners)
§ Include the patient partner interpretation in the report
(e.g., executive summary of findings)
Minimize barriers to patient and public
engagement, which include:
§ Tokenism
§ Not taking the time to build trust and respect
§ Conflicting priorities
§ A lack of preparation and training
§ Power imbalances
§ Challenges related to ethnic, cultural,
social, and organizational differences
Funding Acknowledgement
§ The Strategy for Patient-Oriented Research Evidence Alliance is
supported by the Canadian Institutes of Health Research (CIHR)
under Canada’s SPOR initiative.
§ COVID-19 Evidence Network to support Decision-making (COVID-
END) is funded by the Canadian Institutes of Health Research
(CIHR) through a one-year operating grant.
20
21
Pertice Moffitt PhD
Researcher, NWT
SUPPORT Unit
Linda Li MSc, PhD
Lead, Knowledge
Translation
Methods Cluster,
BC SUPPORT Unit
Fiona
Clement PhD Ahmed Abou-Setta
MD, PhD
Director, Knowledge
Synthesis Platform,
Manitoba
SUPPORT Unit
Annie LeBlanc PhD
Lead, KT and
Implementation Core,
Quebec SUPPORT
Unit
Janet Curran PhD
Capacity Development
Advisory Committee,
Maritime SUPPORT Unit
Andrea Tricco
MSc, PhD
David Moher
MSc, PhD
Sharon Straus
MD, FRCPC, MSc
Lead, KT Working
Group, Ontario
SUPPORT Unit
Heather
Colquhoun
OT Reg. (ON), PhD
Christina
Godfrey
RN, PhD
Wanrudee
Isaranuwatchai
PhD
Thank You to Our Principal Investigators!
SPECIAL THANKS to Our Central Coordinating Office!
22
Wasifa Zarin MPH
Research Manager
Sabrina Chaudhry MPH
Research Coordinator
Sinit Michael HBSc
Research Assistant
sporevidencealliance.ca @SPORAlliance SPOREA@smh.ca
The Central Coordinating Office of the SPOR Evidence Alliance is
housed within the Knowledge Translation Program at St. Michael’s
Hospital, Unity Health Toronto.
23
Andrea C. Tricco MSc, PhD
Nominated Principal Investigator, SPOR Evidence Alliance
Scientist, Knowledge Translation Program, Li Ka Shing Knowledge Institute, St.
Michael’s Hospital, Unity Health Toronto
Associate Professor, Dalla Lana School of Public Health & Institute of Health
Policy, Management, and Evaluation, University of Toronto
Co-Director & Adjunct Associate Professor, Queen's Collaboration for Health
Care Quality Joanna Briggs Institute Centre of Excellence, Queen’s University
E-mail: Andrea.Tricco@unityhealth.to
Twitter: @ATricco
Presenters
Maureen Dobbins
National Collaborating Centre
for Methods and Tools
(NCCMT)
Sarah Neil-Sztramko
National Collaborating Centre
for Methods and Tools
(NCCMT)
Andrea Tricco
Strategy for Patient-Oriented
Research (SPOR) Evidence
Alliance
Maureen Smith
Patient/Public Partner; Chair,
Cochrane’s Consumer
Network Executive
Amanda Doherty-Kirby
Citizen Member, COVID-END
and SPOR-Evidence Alliance
Abu Dukuly
Citizen Member, COVID-END
and SPOR-Evidence Alliance
Engaging Public
and Patient
Partners in
Rapid Reviews
A Partner's
Experience
Finished
Review
Relevant
Article
Relevant
Article
Relevant
Article
Match
Topic
of
Review
Potential Partner Pool
Meet
Introduction
Topic
Timeline


Experience
Lived
With rapid reviews
2 - 3 weeks
Communication
Did the review
start on time?
Why haven't I
heard anything?
Am I still a
partner on the
review?
Should I reach
out to the lead
researcher?
Contingency Plans
Rapid
Review
Rapid
Review
What will you do
if you are
unable to
complete the
review?
Identifying Themes and Gaps
Remember to give partner time to review
This may mean sharing midway through the
review
Putting the Evidence in Context
Preferred communication method
Listening is key
Check In/Finalize Review
Partner should read through finished review
before publication
Finished
Review
Almost
There
Final
Read
Acknowledge contributions
Lessons Learned
Training nice to have
More opportunities for some as part of a
pool
Timelines are approximate
Communicate clearly and in preferred ways
Final check before publication/submission
Good to have support when you have
concerns/questions
Nice to feel appreciated (compensation,
thank you, name on finished review
Q&A and Discussion
Webinar Feedback
Your responses will be kept anonymous.
Please indicate your level of agreement with the following:
1. Participating in the webinar increased my knowledge and understanding of evidence-informed decision
making.
2. I will use the information from today’s webinar in my own practice.
3. Which of the following statements apply to your experience with the webinar today (check all that
apply):
□ The webinar was relevant to me and my public health practice
□ The webinar was effectively facilitated
□ The webinar had opportunities to participate
□ The webinar was easy to follow along
□ The webinar met my expectations
Strongly agree Agree Undecided Disagree Strongly Disagree
Strongly agree Agree Undecided Disagree Strongly Disagree
Webinars from the NCCMT
Learn more about our webinars:
http://www.nccmt.ca/capacity-development/webinars
29
For more information:
NCCMT website: www.nccmt.ca
Contact: nccmt@mcmaster.ca

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Engaging Public and Patient Partners in Rapid Reviews

  • 1. Welcome! • This webinar will be recorded. • Your microphone and camera will be turned off for the duration of the webinar. • To ensure accessibility, live captions can be enabled from the control panel.
  • 2. October 20, 2021 Presenters: Andrea Tricco Maureen Smith Maureen Dobbins Amanda Doherty-Kirby Sarah Neil-Sztramko Abu Dukuly Facilitator: Emily Clark Engaging Public and Patient Partners in Rapid Reviews
  • 3. Housekeeping • Connection issues • We recommend using a wired Internet Connection • If you are experiencing technical issues please send a private message to Alanna Miller • Use the Q&A and chat to post questions and/or comments throughout the webinar • Post your questions in the Q&A • Send questions about technical difficulties in a private chat to Alanna Miller • Polling
  • 4. After Today After the webinar, access the recording (in English) at www.youtube.com/nccmt and slides in English and French at www.slideshare.net/NCCMT/presentations.
  • 5. Pre-webinar Polling Questions 1.How many people are watching today’s session with you? A) Just Me B) 2-3 C) 4-5 D) 6-10 E) >10 2. Have you visited the National Collaborating Centre for Methods and Tools’ website or used its resources before? A) Yes B) No 3. If you stated YES on the previous question, how many times have you used the NCCMT’s resources? A) Once B) 2-3 times C) 4-10 times D) 10+ times
  • 6.
  • 7. Presenters Maureen Dobbins National Collaborating Centre for Methods and Tools (NCCMT) Sarah Neil-Sztramko National Collaborating Centre for Methods and Tools (NCCMT) Andrea Tricco Strategy for Patient-Oriented Research (SPOR) Evidence Alliance Maureen Smith Patient/Public Partner; Chair, Cochrane’s Consumer Network Executive Amanda Doherty-Kirby Citizen Member, COVID-END and SPOR-Evidence Alliance Abu Dukuly Citizen Member, COVID-END and SPOR-Evidence Alliance
  • 8. Rapid Evidence Service • Urgent and ongoing need for synthesized evidence; little to no capacity among front line public health service delivery organizations • Pivot from synthesis training and support to conducting evidence syntheses • Response to public health decision makers’ requests for evidence on priority public health questions
  • 9. Methods: Rapid Evidence Service • NCCMT prioritizes questions from received requests • Modified steps from the NCCMT Rapid Review Guidebook • “Relay race” • Reviews completed within 5-10+ days 1. Define the question 2. Search for research evidence 3. Critically appraise 4. Synthesize the evidence 5. Identify applicability and transferability issues
  • 10. Receive and prioritize questions • Questions from federal, provincial/territorial, local organizations + international • Weekly team meeting • Assess progress on current reviews • Assess capacity to start new reviews • Prioritization • Avoid duplication • COVID-END • Urgency/relevance of question to Canadian context • Content expertise in house to address question • Availability of useful evidence
  • 11. Formulate Question • PICO or PS (where possible) • Collaboration with requestor and patient and public partners when possible • Used to set inclusion/exclusion criteria
  • 12. Critical appraisal • Completed by one NCCMT reviewer, verified by a second • Conflicts resolved through discussion, input from review lead as needed • A variety of appraisal tools are used depending on design • AMSTAR 1 (Systematic Reviews) • AGREE II (Guidelines) • Joanna Briggs Institute Checklists for all other designs • Each study rated as strong, moderate, low quality
  • 13. GRADE • Grading of Recommendations, Assessment, Development, and Evaluation • How likely are the findings to change with more evidence? • Used to assess certainty of findings based on eight domains (Review Lead) • Risk of bias (quality assessment) • Inconsistency of effects • Indirectness of interventions/outcomes • Imprecision in effect estimate • Publication bias • Magnitude of effect • Dose-response relationship • Accounting for confounding • Certainty of findings rated as: very low, low, moderate, strong
  • 14. Final Product • Question • Executive Summary • Key findings and certainty • What has changed (update) • Overview of evidence and knowledge gaps • Methods • Results • Tables
  • 15. Executive Summary • Background: • 1-2 paragraphs • Key Points: • 3-5 main themes linked to certainty (GRADE) • Overview of evidence and knowledge gaps • 3-5 statements on state of the evidence and major gaps (ie equity issues) For Updates: • 4th paragraph: RE what has changed since previous version
  • 16. Key Questions from NCCMT • How to meaningfully engage patient and public partners with very tight/changing deadlines • Process • Most important steps • How to appropriately incorporate patient and public partners’ input into executive summary • What other things can we do to ensure patient and public partners feel supported and empowered to participate meaningfully
  • 17. Presenters Maureen Dobbins National Collaborating Centre for Methods and Tools (NCCMT) Sarah Neil-Sztramko National Collaborating Centre for Methods and Tools (NCCMT) Andrea Tricco Strategy for Patient-Oriented Research (SPOR) Evidence Alliance Maureen Smith Patient/Public Partner; Chair, Cochrane’s Consumer Network Executive Amanda Doherty-Kirby Citizen Member, COVID-END and SPOR-Evidence Alliance Abu Dukuly Citizen Member, COVID-END and SPOR-Evidence Alliance
  • 18. Partnering with citizens in COVID-END evidence syntheses: Reflections from a patient/public perspective! Maureen Smith Co-Lead COVID-END Citizen Partnership 19 October 2021
  • 19. COVID-END Citizen Partnership: Why? § Many COVID-19 research topics are relevant to citizens (e.g. public health measures, vaccines, societal/economic impacts, etc.) thus engaging them is essential. § Citizens are decision-makers! They are making personal decisions that have tremendous societal impacts. § Citizens can help shape research to be more responsive to the needs of Canadians (e.g., focus on their priorities and relevant outcomes) § Citizens have unique knowledge that can help to interpret and contextualize research evidence
  • 20. Why engage patients & citizens in COVID-19 evidence synthesis? And especially rapid evidence synthesis! § Evidence synthesis is the backbone of policy decisions, clinical guidelines, good practices, etc. We are the end- users! § Patients and citizens should be engaged in: § Prioritizing rapid review topics § Framing the questions and have input on outcomes § Interpreting the findings to make them relevant § Accessing the results in plain language 20
  • 21. 21 Rapid reviews: challenges & solutions Challenges Solutions § Quick turnaround and tight timelines. Some projects are completed within 5-10 business days § Be clear about the timelines so that patient/public partners can decide if they can commit to this schedule § Not enough time to train researchers and patient/citizen partners on how to meaningfully collaborate § We’re offering training and resources for researchers and patient/citizen partners. 23 people took a 10-hour rapid review course for patient/citizen partners! § Difficult to build relationship with rapid projects § Patient/citizen partners understand the COVID reality and the impact this has on engagement. Agree on roles and responsibilities from the onset of your collaboration.
  • 22. A pool of citizens ready to partner with you § 20 citizens recruited from 80 applicants, aiming for diversity: q age q gender q socio-economic status q ethnocultural q geographical (e.g., across Canada, rural/urban/remote areas) q lived experiences (e.g., had COVID, immunocompromised, living with other health conditions, economic, school age children, work with refugees, etc.)
  • 23. Patient/Public Partner Engagement on Rapid Reviews § To improve patient partner engagement on research projects, namely rapid reviews, the SPOR Evidence Alliance partnered with patient partners Maureen Smith and Janet Gunderson to co-develop the Patient Partner Panel for Rapid Reviews training program § Vision: To facilitate meaningful and valuable patient-researcher collaboration in rapid review projects. § Purpose q Present a basic understanding of knowledge synthesis and rapid reviews to ensure that public/patient partners can provide feedback and collaborate meaningfully in rapid review projects. q To efficiently on-board patient partners to various rapid review projects conducted or administered through the SPOR Evidence Alliance and our collaborators. q To improve the overall collaborative experiences for both patient partners and researchers working together on rapid review projects. q To minimize barriers to successful collaboration associated with the rapid nature of these research projects. 23 patient/public partners completed the training program in May 2021. 23
  • 24. Citizen engagement request reform for researchers
  • 25. Appreciation policy § Based on SPOR Evidence Alliance co- produced guidelines q A form will be provided to keep track of citizen partners’ hours (preparation time and meeting time) Source: https://sporevidencealliance.ca/wp- content/uploads/2020/10/SPOR-EA_Patient-Partner-Appreciation-Policy- and-Procedure_2020.pdf
  • 26. Presenters Maureen Dobbins National Collaborating Centre for Methods and Tools (NCCMT) Sarah Neil-Sztramko National Collaborating Centre for Methods and Tools (NCCMT) Andrea Tricco Strategy for Patient-Oriented Research (SPOR) Evidence Alliance Maureen Smith Patient/Public Partner; Chair, Cochrane’s Consumer Network Executive Amanda Doherty-Kirby Citizen Member, COVID-END and SPOR-Evidence Alliance Abu Dukuly Citizen Member, COVID-END and SPOR-Evidence Alliance
  • 27. Patient Engagement in the SPOR Evidence Alliance Andrea Tricco PhD, MSc Director & Scientist, Knowledge Synthesis Team, Knowledge Translation Program, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Unity Health Toronto Associate Professor, Dalla Lana School of Public Health & Institute of Health Policy, Management, and Evaluation, University of Toronto Co-Director & Adjunct Associate Professor, Queen's Collaboration for Health Care Quality Joanna Briggs Institute Centre of Excellence, Queen’s University Twitter: @ATricco
  • 28. Acknowledgement of Traditional Land We wish to acknowledge the land on which the Central Coordinating Office of the SPOR Evidence Alliance operates. The central office is located on land now known as Tkaronto (Toronto). Tkaronto is the traditional territory of many groups, including the Mississaugas of the Credit and the Chippewa/ Ojibwe of the Anishnaabe Nations; the Haudenosaunee, and the Wendat. It is now home to many diverse First Nations, Inuit and Métis peoples. We also acknowledge that Tkaronto is covered by Treaty 13 with the Mississaugas of the Credit and The Dish with One Spoon treaty between the Anishinaabe, Mississaugas and Haudenosaunee that connected them to share the territory and protect the land. All Indigenous Nations and peoples, Europeans and newcomers, have been invited into this treaty in the spirit of peace, friendship and respect. We would like to honour the Elders and Knowledge Keepers, both past and present, and are committed to continuing to learn and respect the history and culture of the communities that have come before and presently reside here. We acknowledge the harms of the past and present, and we dedicate ourselves to work with and listen to First Nations, Inuit and Métis communities in the spirit of reconciliation and partnership. We recognize and are grateful to have this opportunity to work on this land, and commit to caring for this land and continuously and actively working towards reconciliation. We recognize that Indigenous practices of health and well-being have been in place in this territory for over 10,000 years and are maintained to this day. 2
  • 29. Conflicts of Interest 3 § Financial competing interests: I declare no financial competing interests § Academic competing interests: I hold a Tier 2 Canada Research Chair in knowledge synthesis and several grants to advance the science of knowledge synthesis § Other competing interests: I receive a small stipend as an Associate Editor for the Journal of Clinical Epidemiology, am unpaid Associated Editor for Systematic Reviews, and sit on the Editorial Board as an unpaid member for the BMC Medicine and JBI Evidence Synthesis journals
  • 30. About the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance 4
  • 31. Inception of the SPOR Evidence Alliance CIHR releases the Strategy document of SPOR 2011 § Noted gaps in the production of knowledge synthesis and in the development, dissemination and uptake of clinical practice guidelines CIHR releases funding opportunity 2016 § 175 researchers, trainees, patients and health system decision- makers from across Canada joined together to form the SPOR Evidence Alliance SPOR Evidence Alliance is funded 2017 § SPOR Evidence Alliance received $5 million funding for a 5-year period and are currently in our fourth year of full operation 5
  • 32. What We Do 6 KEY ACTIVITIES Knowledge Synthesis Clinical Practice Guidelines Knowledge Translation Research Query Services We have researchers across Canada with diverse expertise who can respond to decision-maker research needs Training and Skills Development We offer a range of courses and workshops to support and grow researchers and decision-makers who use research findings Ideas and Innovation We promote and advance the use of scientific knowledge
  • 33. We Welcome Patient Partners, Researchers, Trainees, and Knowledge Users from Across Canada and Beyond Decision- makers 17% Patients and Public 11% Researchers 55% Trainees 18% MEMBERS (N=348) 7 Research Trainees are graduate students or post- doctoral fellows who work under the formal supervision of an independent researcher Decision-makers are individuals using research findings to make informed decisions about health practice and policy changes Patients and Public includes informal caregivers such as family and friends and individuals with personal experience of a health issue Researchers are individuals with a full-time, independent research appointment at an academic or research institution (e.g., scientist) Membership registration is free: https://sporevidencealliance.ca/get-involved/become-an-alliance-member/
  • 34. 8 § The SPOR Evidence Alliance works with the decision-maker to refine the scope of the query and ensure it is tailored to their needs § A researcher with relevant expertise is nominated to address the query § Decision-makers are integrated throughout the research process Research Team Ongoing collaboration & engagement Decision-makers Online submission Query Intake Research Needs & Conduct We Provide Research Services to Decision-makers, Including Patient Partners Decision-makers Knowledge Products § Knowledge products, tools and dissemination activities are tailored to decision-maker needs § Decision-makers can submit queries on knowledge synthesis, guideline development, and/or knowledge translation using a web-based form
  • 35. 9 Research Query Services: Progress To Date Goal: To respond to 100 queries from decision-makers over the duration of the 5-year CIHR funding period 135 queries received to date Addressed (n=79) In Progress (n=31) Ineligible/Withdrawn (n=23) Pending Prioritization/ Topic Refinement (n=2) 194 decision-makers, 180 patient partners, and 95 trainees were engaged
  • 36. Our Research Teams 10 A total of 18 research teams from across Canada have led a project BC: 3 (16.7%) MB: 1 (5.6%) NL: 2 (11.1%) NS: 2 (11.1%) NT: 1 (5.6%) ON: 5 (27.6%) QC: 4 (22.2%)
  • 37. We Respond to Research Questions from Decision-makers, and Patient and Public Partners § Research queries were submitted by 45 different organizations whose reach was: o Provincial (n=23) o National (n=20) o International (n=2) § 3 patient-submitted topics have been selected from a pool of 11 received o The selection process was undertaken by our Patient Topic Prioritization Panel (n=22 members) 11 Government 56% Guideline Developer 8% Health system manager 5% Multinational Health Agency 12% Health Professional College/Health care provider 9% Patient/Public Partner 3% Health Advocacy Group 1% SPOR entities 6%
  • 38. We Respond to COVID-19-Related Research Requests § We respond to urgent requests from decision-makers for information on COVID-19 § These requests have rapid timelines, with turnaround of as little as 5-10 business days § We engage 1-2 patient partners in each query 12 https://sporevidencealliance.ca/key-activities/covid-19-evidence-synthesis/ § To date, 37 requests have been completed or are in progress § COVID-19-related project information is posted to our website
  • 39. We Use and Promote the Principles of Open Science and Encourage Publication by Patient Partners 13 § Goal: To produce 100 knowledge user products over the funding period § To date our research query services have produced a number of knowledge products such as peer-reviewed journal publications, reports, and other publications (e.g., protocols, research briefs, plain language summaries) Peer-reviewed Publications 40 Reports Delivered 85 Other Knowledge Products 48 § We submitted a series of 4 papers on the SPOR Evidence Alliance to the FACETS journal including patient partners as co-authors on each one
  • 40. We Provide Capacity Building Opportunities to Trainees and Patient Partners § Goal: To train 50 early career researchers and more than 200 graduate/post-graduate trainees over the funding period § To date: o 1,970 learners have taken part in 111 learning opportunities developed or co- developed by the SPOR Evidence Alliance o 24 patient partners have been trained on rapid reviews through our Patient Partner Panel for Rapid Reviews Training Program o 6 trainees (doctoral or post-doctoral students) have been the recipients of $10,000 each for their novel research projects through our annual Seed Grant funding opportunity (45 applications received over 2 years) ● Learn more about the Seed Grant recipients’ projects here: https://sporevidencealliance.ca/key-activities/advancing-science/ 14
  • 41. We Work with Indigenous Populations § We have a strong commitment toward Indigenous Peoples’ engagement in research, and have undertaken several research projects within this priority area: 15 Project Title Research Leads Exploring Strategies to Reduce Family Violence in the Northwest Territories: A Scoping Review Dr. Pertice Moffitt Community Wisdom: Creating a Comprehensive Approach to End Family Violence in the Northwest Territories Dr. Pertice Moffitt Engaging Métis Citizens in Manitoba in the Development of Child Health Resources Ms. Lisa Knisley Jones Shared Decision-Making Tools and Approaches to Support/Enhance Participation of Indigenous People in Health Decisions Dr. Janet Jull Explore cervical cancer screening interventions that can enable community members to do self- screening Dr. Janet Jull Conducting Knowledge Synthesis Following Indigenous Ways of Knowing and Doing Dr. Janet Jull Exploring Traditional Healers’ Roles and Experiences in Dementia Care for Indigenous Populations Dr. Jennifer Walker Colorectal Cancer Screening Dr. Jill Tinmouth and Dr. Janet Jull
  • 42. We Work with Patient and Public Partners § We engage with patient partners, caregivers, and members of the public in all our activities 16 Number of patient partners in governance 13 Ø Number of committees with patient partners co-chairs 3 Number of policies co-developed with patient partners 2 Number of patient partners peer reviewers across 2 seed grant opportunities 14 Number of research queries submitted by patient partners 11 Ø Number of patient-submitted topics prioritized for further study (with patient partners as co-leads) 3 Number of patient partners participating in the Patient Partner Panel for Rapid Reviews (co-developed with 2 patient partners) 24
  • 43. Patient and Public Engagement in Rapid Reviews 17
  • 44. Patient Engagement Resources § The SPOR Evidence Alliance has developed a guidance document to support researchers in engaging patient and public members as partners in research § The document includes tips on: o How and when to meaningfully engage patient and public partners o Budgeting for patient and public engagement ● SPOR Evidence Alliance Patient Partner Appreciation Policy and Procedure (available from https://sporevidencealliance.ca/about/policies-procedures/) o Links to planning, communication and evaluation resources § Also see our Rapid Reviews Methods Guidance resource o This includes tips on engaging patients and the public as partners in rapid reviews o Available from https://sporevidencealliance.ca/wp- content/uploads/2021/08/6.-SPOREA- COVIDEND_Rapid-Review-Resources.pdf 18 https://sporevidencealliance.ca/wp-content/uploads/2021/08/7.-SPOREA- COVIDEND_Patient-and-Public-Engagement-for-Researchers.pdf
  • 45. Patient Engagement - Lessons Learned Provide training § Both researcher and patient/public members on the team will need training § Engage more than 1 patient or public partner o 2-3 patient or public partners will provide different insights and help support each other Start early § The earlier patients and public partners are engaged in the project, the more they will know about the project and be able to effectively contribute Budget § Provide fair compensation to patient and public partners, reimburse for meeting and travel related expenses, etc. o Use the Patient Partner Appreciation Policy and Protocol co-developed by patients (https://sporevidencealliance.ca/about/policies- procedures/) 19 Create a positive, inclusive environment § Be curious, enthusiastic, open and genuine § Share experiences, information and ideas § Listen actively, invite others to talk and be respectful when there are differing opinions § Co-produce knowledge products and acknowledge contributions (e.g., name patient partners) § Include the patient partner interpretation in the report (e.g., executive summary of findings) Minimize barriers to patient and public engagement, which include: § Tokenism § Not taking the time to build trust and respect § Conflicting priorities § A lack of preparation and training § Power imbalances § Challenges related to ethnic, cultural, social, and organizational differences
  • 46. Funding Acknowledgement § The Strategy for Patient-Oriented Research Evidence Alliance is supported by the Canadian Institutes of Health Research (CIHR) under Canada’s SPOR initiative. § COVID-19 Evidence Network to support Decision-making (COVID- END) is funded by the Canadian Institutes of Health Research (CIHR) through a one-year operating grant. 20
  • 47. 21 Pertice Moffitt PhD Researcher, NWT SUPPORT Unit Linda Li MSc, PhD Lead, Knowledge Translation Methods Cluster, BC SUPPORT Unit Fiona Clement PhD Ahmed Abou-Setta MD, PhD Director, Knowledge Synthesis Platform, Manitoba SUPPORT Unit Annie LeBlanc PhD Lead, KT and Implementation Core, Quebec SUPPORT Unit Janet Curran PhD Capacity Development Advisory Committee, Maritime SUPPORT Unit Andrea Tricco MSc, PhD David Moher MSc, PhD Sharon Straus MD, FRCPC, MSc Lead, KT Working Group, Ontario SUPPORT Unit Heather Colquhoun OT Reg. (ON), PhD Christina Godfrey RN, PhD Wanrudee Isaranuwatchai PhD Thank You to Our Principal Investigators!
  • 48. SPECIAL THANKS to Our Central Coordinating Office! 22 Wasifa Zarin MPH Research Manager Sabrina Chaudhry MPH Research Coordinator Sinit Michael HBSc Research Assistant sporevidencealliance.ca @SPORAlliance SPOREA@smh.ca The Central Coordinating Office of the SPOR Evidence Alliance is housed within the Knowledge Translation Program at St. Michael’s Hospital, Unity Health Toronto.
  • 49. 23 Andrea C. Tricco MSc, PhD Nominated Principal Investigator, SPOR Evidence Alliance Scientist, Knowledge Translation Program, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Unity Health Toronto Associate Professor, Dalla Lana School of Public Health & Institute of Health Policy, Management, and Evaluation, University of Toronto Co-Director & Adjunct Associate Professor, Queen's Collaboration for Health Care Quality Joanna Briggs Institute Centre of Excellence, Queen’s University E-mail: Andrea.Tricco@unityhealth.to Twitter: @ATricco
  • 50. Presenters Maureen Dobbins National Collaborating Centre for Methods and Tools (NCCMT) Sarah Neil-Sztramko National Collaborating Centre for Methods and Tools (NCCMT) Andrea Tricco Strategy for Patient-Oriented Research (SPOR) Evidence Alliance Maureen Smith Patient/Public Partner; Chair, Cochrane’s Consumer Network Executive Amanda Doherty-Kirby Citizen Member, COVID-END and SPOR-Evidence Alliance Abu Dukuly Citizen Member, COVID-END and SPOR-Evidence Alliance
  • 51. Engaging Public and Patient Partners in Rapid Reviews A Partner's Experience Finished Review Relevant Article Relevant Article Relevant Article
  • 54. Communication Did the review start on time? Why haven't I heard anything? Am I still a partner on the review? Should I reach out to the lead researcher?
  • 55. Contingency Plans Rapid Review Rapid Review What will you do if you are unable to complete the review?
  • 56. Identifying Themes and Gaps Remember to give partner time to review This may mean sharing midway through the review Putting the Evidence in Context Preferred communication method Listening is key
  • 57. Check In/Finalize Review Partner should read through finished review before publication Finished Review Almost There Final Read Acknowledge contributions
  • 58. Lessons Learned Training nice to have More opportunities for some as part of a pool Timelines are approximate Communicate clearly and in preferred ways Final check before publication/submission Good to have support when you have concerns/questions Nice to feel appreciated (compensation, thank you, name on finished review
  • 60. Webinar Feedback Your responses will be kept anonymous. Please indicate your level of agreement with the following: 1. Participating in the webinar increased my knowledge and understanding of evidence-informed decision making. 2. I will use the information from today’s webinar in my own practice. 3. Which of the following statements apply to your experience with the webinar today (check all that apply): □ The webinar was relevant to me and my public health practice □ The webinar was effectively facilitated □ The webinar had opportunities to participate □ The webinar was easy to follow along □ The webinar met my expectations Strongly agree Agree Undecided Disagree Strongly Disagree Strongly agree Agree Undecided Disagree Strongly Disagree
  • 61. Webinars from the NCCMT Learn more about our webinars: http://www.nccmt.ca/capacity-development/webinars 29
  • 62. For more information: NCCMT website: www.nccmt.ca Contact: nccmt@mcmaster.ca