Engaging Public and Patient Partners in Rapid Reviews

Engaging Public and Patient Partners in Rapid Reviews
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
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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
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
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
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
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