Happy November Everyone!
Well, we are edging towards the completion of another year and I'm thankful that you continue to connect with us! We are considering what sort of extended learning opportunities may be beneficial for you all.
November 8-9th was the Kids Brain Health Network Conference and the FER team would like to thank KBHN for the space to host this year's Luke's Legacy Lecture which was about how not to do patient engagement and focusing on a transition to building back trust.
We are thankful for all that we have learned as a team in 2021 and continue to explore how to support you into the new year. Some of the challenges ahead may be wondering what lies next on your path. Looking for someone to chat with? Needing to bounce some ideas off someone who's been there? Consider contributing to the newsletter with your challenge or connect with me at martensr@mcmaster.ca
All the best to you!
Rachel Martens
Research Engagement Strategist
Kids Brain Health Network and CanChild
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Luke's Legacy Family Research Rounds
November 24th, 2021 | 7:00 to 8:00 PM EST
So much to learn: Lessons families have taught me in clinical neuroscience research
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Watch the last Luke's Legacy Family Research Round! |
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Now recruiting Fall Grads 2019 and 2020 to participate in a longitudinal evaluation of the FER Course |
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FER Grads (Winter 2021) Berna Elias, Delphine Gaudin-Drouelle, Maude Champagne, and Catrine Demers developed the infographics below in both English and French. Click the picture of the infographic to download.
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This infographic by FER Grads Berna Elias, Delphine Gaudin-Drouelle, Maude Champagne, and Catrine Demers provides information on how power imbalance can occur in family engagement in research, how it impacts partnership, what are the indicators of power imbalance, and how to prevent it throughout the stages of research. The complementary list of questions supports the research team in their self-reflection practice to ensure a shared power environment for partnership in research.
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Cette infographie par Berna Elias, Delphine Gaudin-Drouelle, Maude Champagne, et Catrine Demers donne des informations sur : 1) les rapports de pouvoir qui peuvent se produire lors de l’engagement des familles en recherche; 2) l'influence des rapports de pouvoir sur le partenariat; 3) les facteurs qui contribuent aux rapports de pouvoir qui peuvent être analysés par l'équipe de recherche afin de détecter cette dynamique et 4) les façons de prévenir l'apparition des rapports de pouvoir tout au long du processus de recherche. La liste complémentaire de questions soutient l'équipe de recherche dans sa pratique d’autoréflexion afin de permettre un partage des pouvoirs pour un environnement plus égalitaire lors de l'engagement des familles en recherche.
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Poster Presentation by FER Grads
FER Grads Berna Elias, Delphine Gaudin-Drouelle, Maude Champagne, and Catrine Demers presented their KT tool on power imbalance at the Kids Brain Health Network Conference. Check out their poster presentation below!
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Indigenous Disability Awareness Month
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Encouraged by the many people, groups and communities, acknowledge the month of November as National Indigneous Disability Month, Rachel Martens encourages you to download the proclamation, add your name, group or organization. Follow @BCANDS1
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Upcoming Conferences and Webinars
EACD 2022 Conference - Abstract Submission
Deadline: November 30th | 11:59 CET
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The scientific committee of the 34th Annual Meeting of the European Academy of Childhood Disability (EACD) invites you to submit your abstracts for oral communications and/or poster presentations. Be aware that only abstracts following the Guidelines for Abstract Submission (see here) will be accepted.
Consider submitting your KT tool with your FER group!
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CHILD-BRIGHT Network Patient-Oriented Research Discussions
November 25th and January 27th | 11:00 - 12:30 PM EST
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CHILD-BRIGHT launched its inaugural Patient-Oriented research Discussions (PODs) series to enhance the exchange of ideas between all stakeholders within the CHILD-BRIGHT network. Each session will be hosted to explore content related to patient engagement in research and will be hosted by a presenter who will pick the topic and resource(s) for discussion. These sessions will include a 60-minute exploration of the resource/topic as well as an optional 30-minute networking opportunity. Click here for more information and click the topics below to register.
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FER Employment and Engagement Opportunities |
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Calling Parent Grads!
PCAC Co-Chair Opportunity with SKIP
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Solutions for Kids in Pain (SKIP) is seeking a family member with a diverse background to provide leadership on patient engagement & partnership practice.
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Parent Advisor Opportunity with CHILD-BRIGHT
Engagement length and expected time commitment:
CHILD-BRIGHT is looking to engage interested individuals by November 15 for 8 weeks for approximately 10-15 hours. This will be from December 1, 2021 to January 31, 2022. Your participation is expected to include:
- Reviewing and contributing advice/feedback on questions about interventions for CP for caregivers.
- Participating in online discussions and in meetings, when applicable.
Compensation:
Compensation is $125 for this study.
May be of interest to:
Parents of young children (10 years or younger) with a lived experience of CP.
Specific skills that could be an asset:
Any experience with research (e.g. participation in a study).
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Training Opportunities and Resources
EQUATOR Canada Publication School
January 31st and February 1st | 10:00 - 2:00 PM EST
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The EQUATOR Canada Publication School is a highly rated, intensive, and interactive course that will introduce course attendees to the principles and practice of publication science. This course is designed for both patient partners who have had experience with working with a research team and trainees/early career researchers. Course attendees will gain an understanding of the myriad of factors that can influence and impact the integrity of the scientific record and access strategies and resources to deal with them.
Topics will include:
- Patient partnership in research and publishing
- How do biomedical journals operate?
- Publication ethics, authorship, and research integrity
- An introduction to reporting guidelines
- Navigating peer review
- Open science practices: why and how?
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Learn about patient partners and tokenism in research
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An important part of pain research is patient partnership, where researchers work with people with lived experience to understand their perspectives. While patient partners are invaluable to research projects, some feel tokenized -- like their voices are included but largely ignored. How can we change this?
In this month’s episode of the Pain Waves podcast, we’re joined by Dr. Dawn Richards, a researcher, patient partner, and patient engagement expert. She talks to us about a recent blog post she co-authored on the topic of Tokenism in Patient Engagement and offers advice on how to overcome it.
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Recent Publications
Publication by 11 FER Affiliates
Building a culture of engagement at a research centre for childhood disability
This article, collectively co-authored by 24 CanChild researchers, staff, trainees and parents, examines how a culture of family engagement has been built at CanChild Centre for Childhood Disability Research. Over time, parents’ involvement evolved from being consulted on research studies to undertaking decision-making roles as partners. CanChild’s work with parents is underpinned by the values of openness and a commitment to learning and improving. These values are embraced by the leadership, mentored and instilled into the next generation of researchers and permeate all levels of the organization, including both research and clinical work. Opportunities for connecting, training, and knowledge exchange, help to cultivate a growing community of engagement.
Authors: Kinga Pozniak, Francine Buchanan, Andrea Cross, Jennifer Crowson, Barb Galuppi, Danijela Grahovac, Jan Willem Gorter, Oksana Hlyva, Marjolijn Ketelaar, Olaf Kraus de Camargo, Manda Krpan Mesic, Rachel Martens, Dayle McCauley, Linda Nguyen, Robert J. Palisano, Michelle Phoenix, Connie Putterman, Peter Rosenbaum, Jennifer Sprung, Sonya Strohm, Rachel Teplicky, Donna Thomson, and Marilyn Wright
(Research Involvement and Engagement)
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Publication on Patient Engagement in Research
Patient and family engagement in the development of core outcome sets for two rare chronic diseases in children
This article details the processes used to engage patients and families in developing core outcome sets for two rare diseases in children. Core Outcome Sets (COS) are outcomes that have been agreed upon by various groups (i.e. health care providers, researchers and patients) as being useful and important to measure in research. This study used a review of available evidence, Delphi survey, and workshop to identify COS for the two chronic paediatric conditions. Patient partners and family advisors were involved in various stages, such as developing the study protocol, leading engagement activities, developing outcome definitions and selecting measurement instruments for the outcomes. The methods used in this study can inform meaningful incorporation and engagement of patient and family perspectives in other paediatric research.
Authors: Shelley M. Vanderhout, Maureen Smith, Nicole Pallone, Kylie Tingley, Michael Ougliese, Pranesh Chakraborty, Sylvia Stoockler, Martin Offringa, Nancy Butcher, Stuart G. Nicholls and Beth K. Potter.
(Research Involvement and Engagement)
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Follow us @FERCourse
Contact us at fer@mcmaster.ca
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