PREPPP Info session for applicants
- 3. People with lived/living experience of a health issue being involved in decision- making about research before applying for research funding. Research “with” or “by” people with lived/living experience, instead of “for” or “about” them Patient Engagement 3
- 4. PARTICIPANTS • People recruited to study about whom data is collected (e.g., focus groups, surveys) • No decision-making power about research topic or design PARTNERS • People with lived/living experience of a health condition involved in decision-making about research (e.g., co-researchers, advisory group) Participants vs. Partners 4
- 5. Addresses a key funding gap: • Engaging early in the research process allows for more shared decision-making power and flexibility in research methods & design • People with lived/living experience need to be involved prior to receiving funds • Need funding to engage people Why the PREPPP Award? 5
- 8. • Manitoba researchers, students and community organizations • Planning a health research project or program • Aim to involve patients and/or members of the public in decision-making about research design • Research project not yet funded (still in design or grant development phase) • Previous applicants welcome to re-apply! Who is Eligible? 8
- 10. 1. Overall quality 2. Appropriateness & level of engagement 3. Evidence of commitment to 2-way relationships, trauma-informed approaches, and methods for equity, diversity & inclusion 4. Potential impact of engagement on research, those involved & broader context 5. Feasibility 6. Alignment with principles of patient-oriented research & local health priorities Assessment Criteria 10
- 11. • Clarity – application is easy to read, methods are clearly laid out & logical • All sections & bullet points in application are explicitly addressed • Scope – focused on early engagement, priority- setting, refining the research question, co- developing design and grant development • Originality – demonstrated attempts to consider methods outside of status quo of traditional health research, meeting people where they’re at 1. Overall Quality 11
- 12. • Planned engagement is (or will be) chosen by or co-designed with partners • Methods address explicitly stated needs, values and expectations of partners • Partners have significant decision-making power in research design and grant development – Collaboration or patient/public-directed – Goes beyond consultation 2. Appropriateness 12
- 13. • Readiness to Engage Workbook – Critical reflexive practice questions – Examine perceptions, values, needs, priorities – Assess level of decision-making power and flexibility 2. Resources - Appropriateness 13 http://umanitoba.ca/centre-for-healthcare- innovation/sites/centre-for-healthcare- innovation/files/2021-11/readiness-to- engage-workbook.pdf
- 14. • May be able to involve partners at different levels through different stages of research – For application, focus on level of decision- making power in planning the research – Priority-setting, research questions, design & grant development https://medium.com/knowledgenudge/pe-3- the-levels-of-patient-and-public-involvement- 77026a547f2b 2. Resources – Level of Engagement 14
- 15. • Variety of methods for different stages & levels of engagement • Focus on identifying & prioritizing, research design & development of grant proposal http://umanitoba.ca/centre-for-healthcare- innovation/sites/centre-for-healthcare- innovation/files/2021-11/methods-of-patient- and-public-engagement-guide.pdf 2. Resources – Methods to Engage 15
- 16. • Describe how two-way (reciprocal) relationships will be built and maintained – Developing trust – Transparency about research design & grant processes – Participation in shared learning • Discuss the “bigger picture” and how you envision engagement will impact everyone involved 3. Commitment to Relationships 16
- 17. 3. Resource – Valuing All Voices https://researchinvolvement.biomedcentral.com/articles/ 10.1186/s40900-020-00217-2 17
- 18. • Describe methods for co-creating safety in engagement – Discussions of safe spaces – Guiding principles for working together • 4-part KnowledgeNudge blog series on Trauma-Informed Engagement – https://medium.com/knowledgenudge/trauma -informed-engagement-part-1-understanding- trauma-96f35fb00252 3. Trauma-Informed Approaches 18
- 19. • Discuss how power imbalances will be acknowledged & addressed in engagement • Describe methods to ensure diverse perspectives are included • Explicitly address whose voices may not be heard and who may be missing from the conversation https://medium.com/knowledgenudge/pe-7- how-do-i-find-people-to-involve-in-my-health- research-4d6f1b163419 3. Equity, Diversity & Inclusion (EDI) 19
- 20. • Have a plan for how partners will be involved in decision-making processes • Describe potential benefits and harms and plans to provide supports • Approaches should provide opportunities for co-learning, capacity building, and co- benefit • Consider the bigger picture impact of engagement on the research team, organization and field of research 4. Impact of Engagement 20
- 21. • Be explicit and flexible in regards to plans for engagement – Number of people involved – Duration and frequency of meetings – Roles and responsibilities – How barriers to involvement will be addressed – Contingencies for changes to timelines, budget needs, etc. 5. Feasibility 21
- 22. • Excel-based budgeting calculator with printable one-page budget summary • Provides guidance & suggestions for important considerations – Addressing barriers to involvement – Ensuring supports are accounted for 5. Resource – Budgeting Tool http://umanitoba.ca/centre-for-healthcare- innovation/sites/centre-for-healthcare- innovation/files/2022-02/2020-01- 29_chi_pe_budget_tool_v2.8-3.xlsx 22
- 23. • Engages patients as partners; • Focuses on patient-identified priorities; • Improves patient outcomes; • Conducted by multidisciplinary teams in partnership with relevant stakeholders; AND • Aims to apply knowledge generated to improve healthcare systems and practices 6. Alignment with POR Principles https://cihr-irsc.gc.ca/e/41204.html 23
- 24. • Clearly describe how the research topic/question(s)/priorities were (or will be) chosen and by whom • Explicitly link to local priorities identified by: – Patient/public partners, communities and/or affected populations – Local organizations (CancerCare, AFM, Nine Circles, Mount Carmel, Klinic, SERC, etc.) – Manitoba’s health system – Shared Health Clinical Preventative Services Plan 6. Addresses Local Priorities 24
- 26. • Write in lay language (aim for grade 6 reading level) as patient & public partners will be on review team • Avoid medical jargon and acronyms • Make sure you address all sections of the application form • Limit to 6 pages (not including references and optional letters of support) Preparing Your Application 26
- 27. Sections: 1. Project Information 2. Engagement Activities 3. Patient and Public Partners 4. The Research Team 5. Impact of Engagement 6. Funding Award Budget 7. Optional: Letters of Support The Application Form 27
- 28. • Brief, lay language description of overall research area/topic and its relevance to partners • How research design and grant development decision(s) will be made • Specific goal(s) or outcome(s) of involving partners • Funding opportunities (or agencies) the team plans to apply to in order to fund the research 1. Project Information 28
- 29. • Clear and detailed description of planned engagement – Goals/objectives for each activity – Frequency, duration and number of partners and meetings – Methods for safety and diversity – Supports and/or facilitation services – Opportunities for ongoing engagement 2. Engagement Activities 29
- 30. • Who you hope/plan to engage with • How people involved are partners, rather than participants (though they may be both) • Planned or completed assessment of external readiness to engage (context of potential partners, caregivers, communities, and/or organizations) • Recruitment strategy and how barriers to involvement will be assessed and addressed 3. Patient and Public Partners 30
- 31. • Very brief overview of team members and their roles in engagement • Completed or planned internal assessment of readiness to engage • Barriers and facilitators affecting team’s ability to be flexible and adaptable in decision-making about the research 4. The Research Team 31
- 32. • Specific research decisions to be addressed through engagement • Level of decision-making power • Potential harms and benefits • How power imbalances will be discussed/addressed • Specific processes for ensuring partners’ perspectives, concerns and values are represented and valued in decision-making 5. Impact of Engagement 32
- 33. • Summary of costs • Describe any additional support (funding or in- kind) that may facilitate engagement beyond the amount provided by the PREPPP Award • Emphasis on compensation and addressing barriers to engagement • Do not include costs not directly related to engagement (e.g., transcription, publication, conference fees for researchers) 6. Funding Award Budget 33
- 34. • Not required, will have minimal impact on funding decisions • May describe pre-existing relationships or financial/in-kind supports 7. Optional – Letters of Support 34
- 35. • Application form: https://umanitoba.ca/centre- for-healthcare-innovation/funding- opportunities-and-awards#preparing-for- research-by-engaging-public-and-patient- partners-preppp-award • Resources: https://umanitoba.ca/centre-for- healthcare-innovation/tools-and- resources#patient-engagement • KnowledgeNudge PE Blog Series: http://bit.ly/PE101Blog Relevant PE Resources 35
- 36. • Shimmin et al. 2017: – Trauma-Informed Intersectional Analysis & Critical Reflexive Questions for teams – http://bit.ly/PEinHealthRes • Roche et al. 2020: – The Valuing All Voices Framework for Meaningful Patient & Public Engagement – http://bit.ly/Valuing-All-Voices Relevant Articles 36
- 37. • Funding for 18 months • Free one-hour consult with CHI’s PE team • Additional fee-based services available • Participate in CHI’s Patient & Public Engagement Lunchtime Learning Series • Complete a final report about engagement Successful Applicants 37
- 38. • Engagement in a systematic review on ER wait times (Dr. Maya Jeyaraman) • Community engagement about sugar- sweetened beverage tax (Dr. Natalie Riediger) • Engagement around outcomes of thoracic surgery (Dr. Sadeesh Srinathan) • Family engagement workshop about chronic pain in youth (Drs. Kristy Wittmeier & Kirsten Gerhold) Previous PREPPP Award Winners 38
- 39. • Engaging in scoping review design (Dr. Anna Chudyk) • Engaging in clinical trials design (Dr. Dylan MacKay) • Blog series – engaging youth & caregivers around type 2 diabetes (Leanne Dunne) – Caregiver perspective – Youth perspective – Researcher perspective Previous PREPPP Award Winners 39
Editor's Notes
- #2: Goal of today: share information about the PREPPP award, its purpose, how to prepare your application and some resources that may be helpful
- #3: As well as the ongoing, present day colonial violence perpetrated against Indigenous peoples in the healthcare, justice, education, and child welfare systems We recognize and appreciate the resilience and patience of Indigenous peoples to continue to share their wisdom and knowledge about the land we live and work on And must continue to do our own work to learn about the impact of colonization, of residential schools, and of cultural genocide and the role we as white settlers continue to play in supporting white supremacy and the status quo We must join with Indigenous voices in protecting our earth, the land, water, flora and fauna that work together to give us the gift of life And in the context of patient engagement, learn to respect Indigenous ways of knowing and recognize that they represent the origins of scientific discovery and collaboration And work to unlearn certain ideals of empirical, Western science and medicine instilled in us through formal education, in order to gain a more wholistic understand of our world and ourselves
- #7: PREPPP award provides startup funds for early patient engagement – This year, we have the Children’s Hospital Research Institute of MB as a sponsor Award launched Sept 14, with applications due Nov 14 at 5:00 pm Visit the bitly link for the application and other materials (https://bit.ly/preppp2022) Slides and video recording will be shared with those who registered and on our YouTube page afterward
- #8: Also announcing that CHI has established an award to honour our late colleague Dr. Wattamon Srisakuldee, who passed suddenly in November of last year Wattamon was a passionate advocate for the inclusion of people with lived and living experience of health conditions in health research and services Active member of CHI’s Patient Engagement Champions community of practice and PREPPP award reviewer The Dr. Wattamon Srisakuldee memorial PREPPP Award will provide funds for engagement in technology, engineering or data science research We recognize that patient engagement may be a new concept for many, particularly in STEM research, and we don’t expect anyone to be an expert – it’s very much about demonstrating that passion to collaborate and co-create with people who aren’t traditionally involved in research And of course, our PE team at CHI is here to support you throughout the process, so please don’t hesitate to reach out to us with any questions!
- #9: Health research: work that increases our knowledge of health, disease, and/or health services, and aims to apply that knowledge to help people lead healthier lives The goal is to engage with people with lived experience of a health condition to inform future funding applications for the research project or program We encourage previously unsuccessful applicants to submit a revised application We also recognize that patient engagement is a new concept for many and don’t expect anyone to be experts – what we’re really looking for is evidence that you’re committed to meaningfully involving people with lived experience in guiding the direction of your research, and are flexible and adaptable
- #10: - All the information and links I’m about to share are included in PREPPP Award application, which I’ll get our Special Projects Coordinator Viktoriya to upload to the chat – you can also find it on the website
- #13: Want to strike a balance in your application, between having an idea of how you think you will engage but also being flexible to change these ideas in response to input from partners We understand that things may change, this is the nature of engagement – show us you recognize this as well Make sure to describe how partner input will be used in decision-making, or how they will be involved in decision-making processes
- #14: Will help you better understand your team’s perspectives, biases, needs and commitments in the area you’ll be researching Determine how flexible your team is able and willing to be around certain research and grant writing decisions Allows a more honest and transparent approach to engagement
- #15: Will be important to explicitly address what level of engagement you plan to employ around different research design and grant development decisions A good idea to touch on plans or potential for ongoing engagement throughout the research project, and at what level(s) you hope to engage people if the research is funded Focus should be on planning stage
- #16: Some ideas for different participatory and consensus approaches in this guide – drawn from different fields, including grassroots, community-led initiatives and qualitative research Have heard it can be overwhelming – don’t expect a different method for each stage of research, just a resource to give you some ideas about different approaches that can be used, at different levels of engagement, throughout the research process Again, focus on planning stage Most common: advisory groups, discussion groups, participatory decision-making (often with partners included as members of the research team), and storytelling/narrative approaches
- #18: Framework based on SPOR Patient Engagement Framework, co-developed and refined with voices traditionally less heard in health research Participants identified five main components of meaningful, safe and inclusive engagement and included some how-to items for building trusting relationships in research
- #35: - E.g. if your budget is $10,000 and you’re expecting someone else to chip in, let us know
- #38: Given current context, have extended funding duration to 18 months Winners participate in a consult with our PE team to refine their engagement plans Fee-based services (facilitation, recruitment, planning) are available Expected to participate in our lunchtime learning series Ask that you complete a brief report about the engagement Note that if your application is unsuccessful, we do provide feedback from reviewers should you wish to apply in a subsequent call