This event is now over but if you missed it, a recording is available below.

To enhance the exchange of ideas between all our stakeholders, the CHILD-BRIGHT Network regularly hosts Patient-Oriented research Discussions (PODs). In each session, we discuss and explore content related to patient engagement in research. This can include interesting projects and resources, pieces of media, podcasts, webinars, research articles, or any other materials that involve patient-oriented research (POR). Each session is hosted by a presenter who picks the topic and resources for the session and drives open discussions with all attendees, allowing participants to jointly explore various issues and topics that relate to POR. Each session consists of a 60-minute exploration of the resources and topic identified by the host presenter, followed by an optional 30-minute networking opportunity.

Join us to discuss our fifth topic:

When: Wednesday, July 13, 2022
Time: 8:00 - 9:30 a.m. PT / 11:00 a.m. - 12:30 p.m. ET

End-to-end integration of patients as partners onto your research teams helps ensure that your questions, methods, and findings are meaningful, relevant, and implementable. Equitable compensation not only reduces barriers to contribution, but also reinforces the indispensable importance of incorporating the patient-partner’s lived experience throughout the research process. Join us as we explore some of the ethics of why fair compensation should always be offered and examine some practical strategies to help you overcome the inherent challenges to making payments possible.

Session objectives: 

1. Outline why providing compensation is important and explore some of the inherent challenges that have inhibited or may inhibit patient-partner compensation strategies  

2. Provide a brief overview of CHILD-BRIGHT’s suggested compensation guidelines

3. As a group, explore how certain challenges have been overcome and highlight possible systemic changes that would need to be implemented

Facilitators:

•    Kent Cadogan Loftsgard
•    Crystal Chin
•    Carrie Costello

This event is now over but if you missed it, please feel to watch the recording below

To enhance the exchange of ideas between all our stakeholders, the CHILD-BRIGHT Network is happy to launch its Patient-Oriented research Discussions (PODs). In each of our four (free!) sessions, we will explore content related to patient engagement in research including interesting projects, resources, pieces of media, podcasts, webinars, research articles, or any other materials related to patient-oriented research. Each session will consist of a 60-minute exploration of the resources and topic identified by the host presenter, followed by an optional 30-minute networking opportunity.

Join us to discuss our fourth topic.

When: Thursday, March 24, 2022
Time: 8:00 - 9:30 a.m. PST / 11:00 a.m. - 12:30 p.m. EST

Research suggests that simulation is a powerful tool that allows learners the opportunity to recreate challenging situations and to learn from these experiences in a safe and controlled setting.  

In this session we will use a simulated scenario to explore how expectations may differ between family/youth partners and other members of the research team around how, when and where research findings are shared. This situation was chosen because family partners may be eager to share and implement research findings with their peers and community, while researchers are often required to share findings through publications and formal presentations.  As teams co-develop knowledge translation strategies, the method of sharing information, the audience, and the timing should be discussed, acknowledged and agreed upon by all team members.  

Session objectives: 

1. Explore how to construct appropriate knowledge translation (dissemination of results) activities and products to ensure the priorities of everyone on the team are adequately addressed, while ensuring the integrity of the research process is upheld. 

2. Develop strategies to successfully navigate co-authorship discussions with family/youth partners. 

3. Reiterate the importance of having key discussions (goal of the study; expectations; limitations) at the beginning of the partnership to reduce confusion and disappointment. 

This event is now over but if you missed it, please feel to watch the recording below

To enhance the exchange of ideas between all our stakeholders, the CHILD-BRIGHT Network is happy to launch its Patient-Oriented research Discussions (PODs). In each of our four (free!) sessions, we will explore content related to patient engagement in research including interesting projects, resources, pieces of media, podcasts, webinars, research articles, or any other materials related to patient-oriented research. Each session will consist of a 60-minute exploration of the resources and topic identified by the host presenter, followed by an optional 30-minute networking opportunity. 

Join us to discuss our third topic:

When: Thursday, January 27, 2022
Time: 8:00 - 9:30 a.m. PT / 11:00 a.m. - 12:30 p.m. ET

The intent of patient-oriented research is to involve patient-partners in all phases of a research project. When it comes to data analysis and the interpretation of findings, patient-partners are less frequently engaged in the process. In this session we will adopt a co-learning approach and explore how to promote authentic patient participation in this area. After providing some context, participants will engage in a number of small-group discussions to further explore several key topics, which include:

• Whether engaging patient-partners in data analysis, interpretation of findings, or both, is worth doing and doable.

• The complementary roles and skills of researchers and patient partners

• How researchers and patient-partners can anticipate the time and iterative process required

References:

Cashman S.B., Adeky S., Allen A.J. 3rd, et al. The power and the promise: working with communities to analyze data, interpret findings, and get to outcomes. Am J Public Health. 2008 Aug;98(8):1407-17. https://doi.org/10.2105/AJPH.2007.113571

Domecq, J.P., Prutsky, G., Elraiyah, T. et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14, 89. https://doi.org/10.1186/1472-6963-14-89 

Forsythe L.P., Ellis L.E., Edmundson L., et al. Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned. J Gen Intern Med. 2016;31(1):13-21. https://doi.org/10.1007/s11606-015-3450-z

This event is now over but if you missed it, please feel to watch the recording below

To enhance the exchange of ideas between all our stakeholders, the CHILD-BRIGHT Network is happy to launch its Patient-Oriented research Discussions (PODs). In each of our four (free!) sessions, we will explore content related to patient engagement in research including interesting projects, resources, pieces of media, podcasts, webinars, research articles, or any other materials related to patient-oriented research. Each session will consist of a 60-minute exploration of the resources and topic identified by the host presenter, followed by an optional 30-minute networking opportunity. 

Join us to discuss our second topic.

When: Thursday, November 25, 2021
Time: 8:00 - 9:30 a.m. PT / 11:00 a.m. - 12:30 p.m. ET

In this session we will provide an overview of a select number of resources aimed at developing capacity in patient-oriented research (POR) and outline the benefits & drawbacks of each. Selected resources include:

POR Training Programs:

• Patient-Oriented Research Curriculum in Child Health (PORCCH)

• Family Engagement in Research Course (FER)

• Patient-Oriented Research Training and Learning – Primary Health Care Online Modules (PORTL-PHC)

• FYREworks (Family/Youth/Researcher Education)

• Partners in research Course(PiR)

POR Toolkits & Resources:

• Learning Together Simulations

• The Involvement Matrix

• Workbook to guide the development of a Patient Engagement In Research
  (PEIR) Plan

• SCPOR Patient-Oriented Research Level of Engagement Tool

• Methods of Patient & Public Engagement - A Guide

• Recommendations on Patient Engagement Compensation

• CHILD-BRIGHT: Guidelines for Patient-Partner Compensation

• CIHR Jargon Buster

The goal of the session is to highlight select resources that can be used to familiarize researchers and patient-partners to the basic elements of POR and promote authentic engagement within the research team. During the session, audience members will also be encouraged to share any specific POR capacity-development assets that they have found particularly useful in the context of their own work.

In addition to the resources featured above, the PODs team wanted to share a more extensive compilation of available resources with the broader community. Please find the linked spreadsheet here.  It is meant to be an editable resource with the intention to crowdsource additional tools, resources, and training programs that would be beneficial to POR teams.

This event is now over but if you missed it, please feel free to watch the recording below

To enhance the exchange of ideas between all our stakeholders, the CHILD-BRIGHT Network is happy to launch its Patient-Oriented research Discussions (PODs). In each of our four (free!) sessions, we will explore content related to patient engagement in research including interesting projects, resources, pieces of media, podcasts, webinars, research articles, or any other materials related to patient-oriented research. Each session will consist of a 60-minute exploration of the resources and topic identified by the host presenter, followed by an optional 30-minute networking opportunity. 

Join us to discuss our first topic.

When: Thursday, September 23, 2021
Time: 8:00 - 9:30 a.m. PT / 11:00 a.m. - 12:30 p.m. ET

Patient engagement throughout the research process takes effort and time. Incorporating a POR perspective in a graduate-student led project presents unique challenges that can be addressed by employing high-level strategies that promote stakeholder buy-in. During this session we will outline various approaches that can set the stage for productive and authentic engagement.

This webinar is now over but if you missed it, please feel free to watch the recordings below

Join us again this year as we host free webinars as part of our annual Summer Learning Series. Our webinars are open to all interested in delving deeper into topics related to Patient-Oriented Research (POR)

Join us for the second of these sessions:

When: Tuesday, July 21, 2020
Time: 11:30 a.m-1:00 p.m. EDT / 8:30-10:00 a.m. PDT

There is a growing body of evidence that shows that involving patients and their families in applied clinical research as patient research partners can enhance the relevance, quality, impact and utility of research findings. However, the literature describes a number of multifaceted and complex challenges that researchers and patient-partners face when partnering in the research process.  Some of the core challenges described in the literature include:

• Setting clear and realistic expectations for all parties

• Patient research partners feeling empowered to provide meaningful input

• Eliciting meaningful input

• Addressing opposing views or opinions.

The underlying themes permeating these challenges are trust, reciprocity and communication. Existing online modules are helpful resources to teach the basic principles of research and the concept of patient-oriented research; however, given the complexity of these relational challenges, didactic and/or independent courses are not sufficient to ensure meaningful patient research partner engagement. 

Research suggests that simulation is a powerful tool that allows learners the opportunity to recreate challenging situations within the healthcare environment and to learn from these experiences in a safe and controlled setting.  Simulations use ‘devices, trained persons, lifelike virtual environments, and contrived social situations to mimic problems, events or conditions that arise in professional encounters’. During and directly after a simulation, learners are guided through rich discussions and have the opportunity to react to, rethink and reshape their learning.  

Given the above, our team has leveraged a simulation-based, co-designed approach to develop a suite of four simulations for research teams and patients and caregivers to learn how to support each other through some of the most complex and challenging situations associated with patient engagement in research. These simulations were co-developed with youth with disabilities, parents of children with disabilities, trainees, research staff, and scientists. 

During this webinar we will endeavour to:

1. Introduce the audience to the use of simulation as a powerful tool that allows learners the opportunity to recreate challenging situations and learn from these experiences in a safe and controlled environment.

2. Share our approach to evaluating how youth, parent/primary caregivers, trainees, clinicians, and researchers construct their experience of co-building collaborative research simulations.

3. Demonstrate and debrief two research engagement simulations:  one through prerecorded video; and one live with standardize patients (actors) engaged in real time.

4. Share our approach to evaluating how youth, parent/primary caregivers, trainees, clinicians, and researchers construct their experience of co-building collaborative research simulations.

Learning Objectives:

1. Understand the value of simulation as a learning tool in general and how it can be leveraged to support the learning of researchers, research staff, trainees and patients partnering in research.

2. Experience two simulations focused on the challenging and complex aspects of research partnership including but not limited to: identifying a research partner, setting expectations; negotiating and including different perspectives and priorities; constructing appropriate knowledge translation activities; demonstrating the value of lived experience; and managing scope creep.

3. Prepare to apply the basic principles of simulation to facilitate two of the research simulations created to support research engagement at your own organization.

This will be an interactive session and participants will be asked to engage in dialogue and step into a simulation virtually. Active participation is voluntary but encouraged.

Facilitators:

• Kathryn Parker, Senior Director, Academic Affairs and Simulation Lead, Teaching and Learning, Holland Bloorview Kids Rehabilitation Hospital

• Michelle Phoenix,  Assistant Professor, CanChild and School of Rehabilitation Science McMaster University. Adjunct scientist Bloorview Research Institute

• Nadia Tanel, Director, Research Growth and Expansion, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital

This webinar is now over but if you missed it, please feel free to watch the recordings below

Join us again this year as we host free webinars as part of our annual Summer Learning Series. Our webinars are open to all interested in delving deeper into topics related to Patient-Oriented Research (POR)

Join us for the first of these sessions:

When: Thursday, July 9, 2020
Time: 3:00-4:00 p.m. EDT / Noon-1:00 p.m. PDT

Research investigating young people’s views on the meaning and perceived benefits (or potential harms) of patient engagement in research studies or other healthcare advisory roles is lacking. This session will showcase research in progress that is funded, in part, by a CHILD-BRIGHT Training Innovation grant. The study involves partnering with youth with disabilities to learn about ethical challenges that arise in relation to fostering meaningful and consequential patient engagement roles and partnerships with disabled youth. Following an overview of literature and debates concerning the benefits and potential unintended harms associated with patient engagement, the presentation will shift to describing the design and methods being used to elicit young people’s own views and experiences in the context of taking up patient engagement roles in children’s rehabilitation.

The aim is to partner with young people to develop guiding principles or ‘terms of engagement’ for advisory roles that optimize potential benefits and are equitable, just, and responsive.

Facilitator: Dr. Gail Teachman, Assistant Professor (Western University, School of Occupational Therapy)

This webinar is now over, but if you missed it, please feel free to consult the webinar slide deck here.

As part of our 2019 Summer Learning Series, CHILD-BRIGHT is hosting free webinars, open to all interested in delving deeper into topics related to Patient-Oriented Research (POR).

Join us for this final session.

When: Thursday, August 22, 2019
Time: 9:00-10:00 a.m. PST / Noon-1:00 p.m. EST

In this session, we will:

• Introduce some of the key historical, contextual, and ethical considerations when considering research involving First Nation peoples and populations

• Explore the importance of integrating both Indigenous and Western knowledge in research approaches

• Discuss the First Nation principles of ownership, control, access, possession (OCAP®)

• Use our project, "Prenatal Opioid Exposure and Neonatal Abstinence Syndrome: A Research Project with Indigenous Peoples in Ontario First Nations", as a case study to illustrate how we embedded these concepts into our research

• Share perspectives on patient-oriented research as Indigenous researchers and community members.

Facilitators:

Christi Poulette, RN, BScN, Health Services Nurse-in-Charge, Oneida Nation of the Thames

Jennifer Walker, PhD, Canada Research Chair in Indigenous Health, Laurentian University, and Indigenous Health Lead, ICES

This webinar is now over, but if you missed it, please feel free to watch the recording below.

As part of our 2019 Summer Learning Series, CHILD-BRIGHT is hosting free webinars, open to all interested in delving deeper into topics related to Patient-Oriented Research (POR).

Join us for the third of these sessions:

When: Wednesday, July 17, 2019
Time: 9:00-10:00 a.m. PST / Noon-1:00 p.m. EST

The key to successful ‘reciprocity’ or ‘the practice of exchanging things with others for mutual benefit in an applied research setting’ is garnering a clear understanding of what different ‘stakeholders’ or partners are hoping to obtain from the exchange.  When these aims and differing perspectives are clearly understood by all partners, this allows for the development of an authentic partnership.  This session will focus on parent/researcher reciprocity within an applied research setting.  

The objectives of this session are the following:

• A discussion of common aims/wishes/motivators for parent stakeholders to engage with research stakeholders in applied research (Brenda Agnew)

• A discussion of common aims/wishes/motivators for researchers to engage with parent stakeholders in applied research (Darcy Fehlings)

• The presentation of a ‘framework’ to promote an authentic partnership between parents and researchers to maximize ‘reciprocity’ and mutual benefit (Heather Shearer)

• To open up a dialogue with participants in the session around perceived barriers and facilitators of successful partnering between parents and researchers.

Facilitators:
Brenda Agnew  (Parent Stakeholder), Heather Shearer (Parent and Research Stakeholder), Darcy Fehlings (Clinician and Research Stakeholder)

When: Wednesday, Jul 10 2019
Time: 12:00 pm Pacific Time / 3:00 p.m. Eastern Time

Join us to learn more about a number of initiatives that are designed to enhance skills and promote the concept of patient-oriented research (POR). In the session we will highlight:

• The Patient-Oriented Research Curriculum in Child Health (PORCCH), a series of self-directed online modules that will be freely available

• The Patient-oriented Research Repository (PoRR), an online matchmaking tool to connect UBC-affiliated POR investigators with students interested in gaining valuable practical experience

• CHILD-BRIGHT's 2019 Summer Learning Series which builds capacity in POR through a series of online webinars

• CHILD-BRIGHT's Training Innovation Fund which supports the development of unique POR training outputs.

Presented by: Dr. Colin Macarthur & Pierre Zwiegers

Colin Macarthur (MBChB, PhD) is currently a Senior Scientist in the Hospital for Sick Children Research Institute in the Child Health Evaluative Sciences Program. Dr. Macarthur is a Professor in the Department of Paediatrics and the Department of Health Policy Management and Evaluation at the University of Toronto. His area of research interest is the epidemiology and prevention of childhood injury.

Pierre Zwiegers (MSc) currently coordinates the training and capacity developing efforts of the CHILD-BRIGHT SPOR Network.

This webinar is now over, but if you missed it, please feel free to watch the recording below.

As part of our 2019 Summer Learning Series, CHILD-BRIGHT is hosting free webinars, open to all interested in delving deeper into topics related to Patient-Oriented Research (POR).

Join us for the second of these sessions:

When: Thursday, June 27, 2019
Time: 9:00-10:00 a.m. PST / Noon-1:00 p.m. EST

Successfully implemented research is completely contingent on recruitment of ample participants that fit inclusion criteria. Donna Thomson, parent and author and Dr. Lach, Associate Professor at McGill University, will discuss challenges associated with recruiting participants from parent and researcher perspectives, and they will identify strategies that increase likelihood of participation. Understanding the dialectic between parent motivation for participation in research and what researchers need for a successful study will shed light on pragmatic approaches that complement these perspectives.

Facilitators: Donna Thomson & Lucyna Lach

This webinar is now over, but if you missed it, please feel free to watch the recording below.

As part of our 2019 Summer Learning Series, CHILD-BRIGHT is hosting free webinars, open to all interested in delving deeper into topics related to Patient-Oriented Research (POR).

Join us for the first of these sessions:

When: Tuesday, June 11, 2019
Time: 9:00-10:00 a.m. PST / Noon-1:00 p.m. EST

The goal of this session is to explore how researchers and family/patient advisors can build a strong foundation for collaboration. Participants will learn:

• How (and why) to engage patient and family advisors early in the research cycle

• How to create communication models that help all participants remain involved; and

• How to manage changes or conflicts with flexible approaches.

Facilitators: Kate Robson & Julia Orkin

This webinar is now over, but if you missed it, please feel free to watch the recording below.

Neurodevelopmental impairment has become the main measure of the Neonatal Intensive Care Unit’s 'success' in preterm outcome research. However, this represents the scientific and medical point of view, not the parents' perspective. The Parent-EPIQ team created the Parents' Voice Project, which aims to engage parents to co-create definitions of important preterm outcomes. This project is an example of how research can be done with families, and not just about families.

This webinar will introduce you to the Parents’ Voice Project and why it is important for parents to be partners in research.

Parent-EPIQ is part of the CHILD-BRIGHT Network of researchers dedicated to developing innovative interventions to improve long-term outcomes for children with brain-based developmental disabilities and is funded in part by the Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research (SPOR).

When: Wednesday, May 8
Time: 11:00am-12:00pm EST 

PRESENTERS

Acknowledgements

This webinar is now over, but if you missed it, please feel free to watch the recording below.

Mental health disorders occur more often in children with neurodisabilites (ND) than in their peers, with only a small percentage receiving mental health care. To help alleviate this troubling situation, researchers partnered with parents to adapt an existing online parenting program to the needs of families of children across neurodisabilities. Combining educational modules with group coaching and -parent-to parent support, Parents Empowering Neurodiverse Kids is the latest in a suite of Strongest Families programs designed to provide parents with skills to help manage their children’s challenging behaviours and holds promise to improve quality of life for children with diagnoses across NDs and their families. This new program will be tested in an upcoming study open to families across Canada.

This webinar will introduce you to the Parents Empowering Neurodiverse Kids program, discuss families’ involvement in this research, and let you know how you can take part or refer others to the study.

The Strongest Families Neurodevelopmental project is part of the CHILD-BRIGHT Network of researchers dedicated to developing innovative interventions to improve long-term outcomes for children with brain-based developmental disabilities and is funded in part by the Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research (SPOR).

When: Wednesday, January 9
Time: 11:00am-12:00pm EST 

PRESENTERS

Patrick McGrath OC, PhD, FRSC, FCAHS
Patrick McGrath is a clinical psychologist, scientist, senior health administrator and social entrepreneur. He is Professor of Psychiatry, Pediatrics and Community Health & Epidemiology at Dalhousie University and a Scientist at the IWK Health Centre.  His major career focus has been to use research to improve care. His research resulted in the not-for-profit Strongest Families Institute that delivers mental health care to thousands of families across Canada and in Finland. 

His research focuses on two areas:  the use of technology to deliver care and pain in child health. He has published extensively and won many awards and recognitions.

Dr. Lucyna Lach
Dr. Lach is an associate professor in the School of Social Work and an associate member of the Departments of Pediatrics, Neurology and Neurosurgery, Faculty of Medicine, McGill University. Her program of research focusses on the quality of life of children with neurodisabilities and their caregivers (i.e. caregiver health and parenting). Dr. Lach's current projects address social determinants of health of children with neurodisabiltiies. She is co-leading a team of researchers and trainees whose projects have been funded by Kids Brain Health Network (KBHN) and the Social Sciences and Humanities Research Council (SSHRC) to document determinants such as income, service use, educational outcomes, and uptake of income supports such as the Disability Tax Credit using population-based as well as administrative and clinical databases. She is also collaborating with Dr. David Nicholas to increase capacity in navigation systems that support families of children with neurodisabilities in Vancouver, Edmonton and Yellowknife. In addition, she is part of a recently funded Strategy for Patient-Oriented Research (SPOR) network called the CHILD-BRIGHT Network, and is co-leading (along with Dr. Patrick McGrath) development and implementation of a randomized controlled trial entitled the Strongest Families Neurodevelopmental Program. This project is evaluating a web-based program that combines group coaching and educational modules with parent-to-parent support for parents whose children have a neurodisability and mental health concerns.  Dr. Lach is a peer-reviewer for numerous journals and organizations that provide research funding.

Donna Thomson
Donna is the author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (The House of Anansi Press, 2014) and is the co-author of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (Rowman and Littlefield, June 2019).  She blogs regularly at her website, The Caregivers’ Living Room (www.donnathomson.com).

Donna has a passionate interest in family engagement in health research. She is a board director of Kids Brain Health Network and is the co-designer of a new post-graduate, online course in the area of patient and family engagement in childhood disability research at McMaster University.  She is a senior family advisor on the SPOR CHILD-BRIGHT Network and a co-researcher on the Strongest Families research project team.

Karen Turner
Karen is a Research Coordinator at the Centre for Research in Family Health at the IWK Health Centre. Karen has extensive knowledge of Strongest Families parenting programs and has worked closely with the Parent Advisory Committee, practitioners and the Strongest Families Institute in modifying the program to ensure its relevance to families of children with neurodevelopmental disabilities. She has expertise in managing large randomized controlled trials and looks forward to providing support to parents and other stakeholders interested in taking part in or referring families to this important study.

This webinar is now over, but if you missed it, please feel free to watch the recording below.

Integration of research and clinical care is highly valued but is often difficult to achieve within the realities of a busy children’s hospital. A model for how this can be achieved is provided by the SPORT trial, a CHILD-BRIGHT multicenter study of non-invasive brain stimulation paired with intensive therapy for children with perinatal stroke and cerebral palsy. With presenters including a clinical therapist, post-doctoral fellow, and clinician scientist, the rationale, methods and early outcomes of this trial will be presented as an example of how such integration might succeed within Canadian pediatric centers.

When: Wednesday, September 12
Time: 11:00am-12:00pm EST 

Speakers:
Alicia Hilderley PhD
Megan Metzler OT
Adam Kirton MD

Adam Kirton MD MSc FRCPC
Dr. Kirton is Professor of Pediatrics, Radiology, and Clinical Neurosciences at the University of Calgary and an attending Pediatric Neurologist at the Alberta Children’s Hospital. His research focuses on applying technologies including non-invasive brain stimulation and neuroimaging to measure and modulate the response of the developing brain to early injury to generate new therapies. He is a clinician scientist and CIHR Foundation Grant Recipient. Dr. Kirton directs the Calgary Pediatric Stroke Program, Alberta Perinatal Stroke Project, ACH Pediatric Non-Invasive Brain Stimulation Laboratory and University of Calgary Noninvasive Neurostimulation Network (N3).

Alicia Hilderley PhD
Alicia is a postdoctoral research fellow with the Calgary Pediatric Stroke Program at the University of Calgary and Alberta Children’s Hospital, working with Dr. Adam Kirton. Her research interests include design and evaluation of pediatric movement interventions, and use of neuroimaging to investigate neural function, structure, and plasticity. Alicia’s doctoral training in Rehabilitation Sciences at the University of Toronto focused on motor learning and neuroplasticity in children with cerebral palsy. She is a Registered Kinesiologist (inactive status) and is actively involved in coaching community adapted sports.

Megan Metzler BScOT MSc
Megan Metzler is an occupational therapist research clinician at the Alberta Children’s Hospital. The role involves promoting integration of clinical best practices, treating children clinically, and supporting ongoing research trials. Her research interests include the efficacy of intensive motor therapies in combination with novel technology after perinatal stroke and the role of therapy for visual deficits arising from neurological injury.

Join us in Montreal on August 15th to learn about patient-oriented research. 

In this session, we will deliver Module 1 of CIHR's Foundational Skills in Patient-Oriented Research curriculum, which introduces the concept of patient engagement in the research process. The session is open to all CHILD-BRIGHT stakeholders, so we encourage any local patient-partners, investigators, and trainees to contribute to the ongoing discussion.

When: Wednesday, August 15
Time: 8:30 AM to 5:00 PM
Location: McGill
(D-20, 3654 Prom Sir-William-Osler, Montréal, Québec H3G 1Y5)

A light breakfast, lunch and refreshments will be offered

For a general overview of the session, please consult the outline.

Final details (including venue information) will be relayed to you approximately one-week prior to the session

Learning Outcomes:
By the end of this module, participants should be able to:

1. Define patient-oriented research and describe how it is different from more traditional health research

2. Articulate why it is beneficial to involve patients in health research 

3. Describe the various roles that patients can meaningfully and actively play in health research, including governance, priority setting, peer review and other committee work, and the conduct of research itself

4. Identify the kinds of roles that they are interested in 

5. Identify future learning needs related to those roles 

6. Assess the unique strengths that patients may bring, not only as patients but through their other personal, educational and professional experiences

7. Describe the spectrum of participation as outlined by the International Association of Public Participation (IAP2)

8. Describe the guiding principles that underpin patient engagement in health research: inclusiveness, support, mutual respect and co-building 

9. Describe examples of ways patients have been involved in patient-oriented research

10. Outline the practical considerations for engaging patients as partners in health research (e.g. compensation, incentives and rewards that are meaningful to the participant, culturally and socially safe environments)

11. Compare patient-reported outcome measures and patient-reported experience measures with measures traditionally used in health research

12. Appreciate the value of personal stories and how they contribute to a better understanding of the needs, values and preferences of patient.

Please relay any inquiries to pierre.zwiegers@child-bright.ca.

Join us in Toronto on August 13th to learn more about patient-oriented research. 

In this session, we will explore Module 1 of CIHR's Foundational Skills in Patient-Oriented Research curriculum, which introduces the concept of patient engagement in the research process. The session is open to all CHILD-BRIGHT stakeholders, so we encourage any local patient-partners, investigators, and trainees to contribute to the ongoing discussion.

When: Monday, August 13
Time: 8:30 AM to 5:00 PM
Location: The Hospital for Sick Children
(Peter Gilgan Centre for Research and Learning, 686 Bay St., Event Rooms 2A and 2B

A light breakfast, lunch and refreshments will be offered.

For a general overview of the session, please consult the outline.

(Final details will be relayed to you approximately one-week prior to the session)

Learning Outcomes:
By the end of this module, participants should be able to:

1. Define patient-oriented research and describe how it is different from more traditional health research

2. Articulate why it is beneficial to involve patients in health research 

3. Describe the various roles that patients can meaningfully and actively play in health research, including governance, priority setting, peer review and other committee work, and the conduct of research itself

4. Identify the kinds of roles that they are interested in 

5. Identify future learning needs related to those roles 

6. Assess the unique strengths that patients may bring, not only as patients but through their other personal, educational and professional experiences

7. Describe the spectrum of participation as outlined by the International Association of Public Participation (IAP2)

8. Describe the guiding principles that underpin patient engagement in health research: inclusiveness, support, mutual respect and co-building

9. Describe examples of ways patients have been involved in patient-oriented research

10. Outline the practical considerations for engaging patients as partners in health research (e.g. compensation, incentives and rewards that are meaningful to the participant, culturally and socially safe environments)

11. Compare patient-reported outcome measures and patient-reported experience measures with measures traditionally used in health research

12. Appreciate the value of personal stories and how they contribute to a better understanding of the needs, values and preferences of patient.

Please relay any inquiries to pierre.zwiegers@child-bright.ca.

This webinar is now over, but if you missed it, please feel free to watch the recording below or click here to see the entire summer series. 

As part of our 2018 Summer Learning Series, CHILD-BRIGHT’s Training program is hosting several free webinars that are open to anyone with an interest in learning more about Patient-Oriented Research (POR).

Join us for the fourth of these sessions:

When: Thursday, Aug. 9, 2018

Time: 10:30-11:30am PST / 1:30-2:30 EST

In this session we will showcase a current research project that values authentic patient engagement. Through exploring their journey, we will get a sense of how the process of patient engagement evolved throughout the process and how certain challenges were addressed.

Details will be finalized and registrants will be updated with any specifics.

Space is limited, so we ask that you RSVP here by July 19th, 2018. Your attendance and all requisite details will be confirmed by July 20th.

This webinar is now over, but if you missed it, please feel free to watch the recording below or click here to see the entire summer series. 

As part of our 2018 Summer Learning Series, CHILD-BRIGHT’s Training program is hosting several free webinars that are open to anyone with an interest in learning more about Patient-Oriented Research (POR).

Join us for the third of these sessions:

When: Thursday, July 26, 2018

Time: 10:30-11:30am PST / 1:30-2:30 EST

Building on the momentum of the previous two sessions, it is time to consider the practical aspects of patient engagement in the research process.  

In this session, we will explore:

• How researchers can move beyond involving patients as research subjects, but as research partners

• The different opportunities for patient engagement throughout each stage of the research. 

Space is limited, so we ask that you RSVP here by July 19th, 2018. Your attendance and all requisite details will be confirmed by July 20th.

This webinar is now over, but if you missed it, please feel free to watch the recording below or click here to see the entire summer series. 

As part of our 2018 Summer Learning Series, CHILD-BRIGHT’s Training program is hosting several free webinars that are open to anyone with an interest in learning more about Patient-Oriented Research (POR).

Join us for the second of these sessions:

When: Thursday, July 5, 2018

Time: 10:30-11:30am PST / 1:30-2:30 EST

In this session, we will explore:

• What authentic patient engagement looks like

• Some of the factors that influence patient engagement in the research process

• How patient engagement can positively impact the outcome(s) of health research.

Space is limited, so we ask that you RSVP here by June 28th, 2018. Your attendance and all requisite details will be confirmed by June 29th.

THIS WEBINAR HAS ALREADY TAKEN PLACE, BUT IF YOU MISSED IT, PLEASE FEEL FREE TO WATCH THE RECORDING BELOW.

Join us for this webinar, highlighting our work, hosted by CAPHC, as part of their CAPHC Presents! series.

Wednesday, June 20
11-12pm EDT

A coach or navigator approach is a new model that is now increasingly used in pediatric health care contexts. This webinar will provide an overview of what a coach is and the current evidence that exists in the use of a coach for parents of children with disabilities. Three research projects funded by CHILD-BRIGHT that use a coach model at three transition points in a child’s development will also be highlighted.

Speakers:
Maureen O'Donnell
Tatiana Ogourtsova
Annette Majnemer
Eyal Cohen

Tatiana Ogourtsova PhD, MSc, BSc OT (c), erg
Tatiana Ogourtsova is a Postdoctoral Fellow at the University of British Columbia (UBC), Department of Medicine, Pediatrics, mentored collaboratively by Dr. Maureen O’Donnell (UBC) and Dr. Annette Majnemer (McGill University) in the CHILD-BRIGHT’s Strategy for Patient Oriented Research. Tatiana is an Occupational Therapist, with several years of clinical experience at the McGill University Health Center – acute care (MUHC, Montreal, PQ). She completed her MSc and PhD in Rehabilitation Sciences at McGill University (Montreal, PQ) in the field of neurorehabilitation and knowledge translation.

Annette Majnemer  PhD, OT, FCAHS
Annette Majnemer is an occupational therapist with doctoral training in the neurosciences. She is a Professor at the School of Physical & Occupational Therapy  (SPOT) at McGill University, with cross appointments in the Departments of Neurology & Neurosurgery and Pediatrics. She is currently Vice Dean – Education for the Faculty of Medicine, McGill University, and is a Senior Scientist at the Research Institute of the McGill University Health Centre where she leads the CHILD-BRIGHT national SPOR Network. 

Eyal Cohen, MD, MSc, FRCP(C)
Dr. Eyal Cohen trained in pediatrics at the Hospital for Sick Children and Children's Hospital at Westmead in Sydney, Australia, completed an MSc in health research methodology at McMaster University in 2008.  Dr. Cohen co-founded the Complex Care Program in the Division of Pediatric Medicine at The Hospital for Sick Children where he is an Associate Scientist in the Research Institute.  He is an Associate Professor of Pediatrics at the University of Toronto with cross-appointments in the Institute of Health Policy, Management and Evaluation.  He is also a Scientist with the CanChild Centre for Childhood Disability Research at McMaster University.

Maureen O'Donnell MD MSc FRCPC
Dr. Maureen O'Donnell is the Executive Director of Child Health BC. A sub-specialist in Developmental Pediatrics, she has served as UBC Division Head, and has held provincial, national and international leadership roles related to her field. She holds a Master’s degree in clinical epidemiology and is an Associate Professor in the UBC Department of Pediatrics.  She served as Special Advisor to BC’s Deputy Minister of Health on CYSN for almost 5 years. Child Health BC is a network bringing together health system planners, administrators, policy makers and professional organizations from across BC and is an initiative of BC Children's Hospital.  

This webinar is now over, but if you missed it, please feel free to watch the recording below or click here to see the entire summer series. 

As part of our 2018 Summer Learning Series, CHILD-BRIGHT’s Training program is hosting several free webinars that are open to anyone with an interest in learning more about Patient-Oriented Research (POR).

Join us for the first of these sessions:

When: Thursday, June 7, 2018

Time: 10:30-11:30am PST / 1:30-2:30 EST

Knowledge generated  through health research rarely makes the leap from bench to bedside. Canada’s Strategy for Patient-Oriented Research (SPOR) is an initiative that hopes to address this discrepancy.

In this session, we will be exploring:

• How Canada’s SPOR is planning to improve health research so that it leads to high-quality & cost-effective care

• How CHILD-BRIGHT fits within the larger scope of Canada’s SPOR.

Space is limited, so we ask that you RSVP here by June 4th, 2018.

This event has now passed, but you can view a recording of this webinar here: 

Event hosted by the BC SUPPORT Unit

March 9, 2018

Noon to 1 p.m. (PST) / 3 to 4 p.m. (EST)

Join us for an update on the CHILD-BRIGHT Network. As one of Canada’s SPOR networks in chronic diseases, CHILD-BRIGHT aims to improve life outcomes for children with brain-based developmental disabilities and their families. During this webinar, hosted by the BC SUPPORT Unit, speakers Daniel Goldowitz, CHILD-BRIGHT Network Co-Director, and Pierre Zwiegers, CHILD-BRIGHT Training Coordinator, will present an overview of the network and its ongoing activities.

FREE ADMISSION

Seminar hosted by ComSanté, Centre de recherche sur la communication et la santé

Participation in sports and leisure activities is an important component of child development, but engagement of children with disabilities remains limited compared to children of the same age. Families and health professionals indicated that access to information on available resources is an essential factor facilitating participation. Families further expressed that a strong social support system improves children's participation in leisure. It is in this context that two researchers from McGill University created Jooay, a free mobile and web-based application offering a repository of adapted or inclusive leisure activities for children with disabilities available across Canada. Jooay is also an online support community allowing the exchange of advice and experiences. The research activities of this project are aimed at (1) mapping the patterns of Behavior Change among Jooay users; (2) identifying the best strategies for disseminating information about adapted leisure and (3) implementing and evaluating methods to optimize the use of this technology. The information gathered through the mobile application will also be used to inform policy and community change. 

Date : February 22nd 2018, from 12:30 PM to 1:45 PM
Speakers : Annette Majnemer, professor, McGill University; Keiko Shikako-Thomas, assistant professor, McGill University.
Building : UQAM's Pavillon Saint-Denis (AB), Montreal
Room: AB-7015

Free activity, but your registration is required.

Facebook Event

Did you miss this event? Watch it now: 

Join Dr. Adam Kirton, Principal Investigator of the CHILD-BRIGHT Enhancing Brain Function with Non-Invasive Stimulation project at this Facebook Live event, hosted by the Alberta Children's Hospital Foundation

2:00 PM ET / NOON MT

Through this highly interactive workshop, participants will begin by defining a shared understanding of integrated knowledge translation. Participants will then discover what it means to “innovate”, and how innovations can be applied to knowledge translation science. Through creative brainstorming techniques and by building partnerships with other participants, attendees will have the opportunity to generate and expand on innovative knowledge translation projects ideas. As an example, an open-mic style period will allow participants to share their project ideas – no matter how daring, outrageous, creative or out-of-the-box they might be. The session will conclude with concrete actions to further conceptualize the ideas discussed, and will encourage partners to participate in the Innovation Incubator funding competition to help bring a unique, innovative integrated Knowledge Translation (iKT) project to life.

Description

The CHILD-BRIGHT’s Knowledge Translation Co-chair team will present an overview of their Knowledge Translation Innovation Incubator workshop and grant competition titled “BRAINstorm” that will take place on November 6th, 2017 in Toronto. This workshop is part of the Brain-Child-Partners conference 2017, a joint event with Kids Brain Health Network. From this presentation, participants should come to appreciate:

• Why we need innovation in Knowledge Translation

• What innovation means in Knowledge Translation

• Why YOU should participate in this BRAINstorm event

• How can YOU find the right partners and develop an idea to participate in the innovative Knowledge Translation project competition

• The unique format, lineup of great presenters and thought provoking activities you will experience during the workshop.

Speakers
Dr. Keiko Shikako-Thomas
Connie Putterman
Dr. Jonathan Weiss

Get to know CHILD-BRIGHT, an innovative pan-Canadian network that aims to improve life outcomes for children with brain-based developmental disabilities and their families.

Join Dr. Annette Majnemer, along with Dr. Steven Miller, Dr. Dan Goldowitz, Frank Gavin and Dr. Keiko Shikako-Thomas as they share an overview of the network and how it is currently supported by patient-oriented research, patient-oriented training, citizen engagement and knowledge translation programs.

From this presentation, participants should come to appreciate:

Speakers:
Dr. Annette Majnemer
Dr. Steven Miller
Dr. Dan Goldowitz
Frank Gavin
Dr. Keiko Shikako-Thomas