April 2024

Happy April Everyone!

My first time at a health research conference as a family partner was an eye opening one. Just walking into the hotel auditorium, the emotional dimensions felt larger than the room itself. Everything felt huge.

This year I celebrate ten years immersed in the world of family engagement and a lot has changed in what I understand about the experience and how it fits within my world. What is so unique about this experience is that how it's defined is set by the people who partner. It's a wonderful thing now to be able to watch others within the FER Program grow and build a trajectory all their own.

If you are someone trying to figure out what that path looks like to you, let's chat sometime. You can always email me at martensr@mcmaster.ca

Today though, I'd like to share a few reflections that helped me contextualize this process based on the work of Helen Bevan on seven simple rules for leaders.

1) Define your Purpose: This doesn't require a strict timeline. You don't have to base it on the experience of others. This may evolve over time and celebrate the wins that matter to you.

2) Root Transformation in a Sense of Belonging: For me even if my time as a partner was a single experience, I know I made a dent in the proverbial universe. I am one of many people making change in the world and that matters no matter the frequency of partnering. I was never alone.

3) Predict and Prevent: Learn from others where there may be road blocks in partner. That way you can recognize and know how you would want to act.

4) Support the Work of Building Agency: Read through the infographic below, understanding how psychological safety evolves in partnerships.

5) Embrace Contradictions and Tensions: Some experiences demand the need to be a teacher and at times that's a complex thing to navigate. Leaning into the reality that this may happen sometimes, you begin to learn how to exercise curiosity or advocate where necessary.

6) Learning Plays a Role in Transformation: Take the time to attend workshops, ask questions, join a community of advocates. You are worth three time investment.

7) Small Goals Contribute towards Your Larger Goal: Take your time. Take care of yourself where you can. Partnering is hard work.

As researchers and clinicians, you have the opportunity the opportunity to watch this transformation play out in real-time. Consider how you can contribute to it.

Wishing you clarity in the journey.

Rae Martens

Knowledge Broker

Research Engagement Strategist

Looking for Lived Experience Opportunities in this Newsletter?

Look for the "🌟" to find highlighted opportunities.

FER Community Opportunities

Share Your Updates With The FER Community

We would love to hear from you and feature your updates in this newsletter! Please click on the button below and share what's new in your world!

The FER Community Network Had Joined Discord! 🌟

Consider staying connected with the FER student and graduate community on the app Discord. (Also available via computer.)

A consistent place to gather more information on recruiting, new resources, and to ask questions regarding best practices in family engagement.

🌟Have an Engagement Challenge You're Working Through?

Book a consult with Rae Martens our Knowledge Broker

Where possible, Rae provides support for partnership matchmaking, research collaborations, and knowledge mobilization planning. For support consider booking a consult by emailing Rae at martensr@mcmaster.ca

The Parking Lot: An Informal, Supportive Space for Family Partners 🌟

Next Event: Thursday, April 18, 2024 1pm EST or 7pm EST

Join us for an exciting online event where we'll dive into all things related to partnering and advising in healthcare and health research. Everyone needs a space to sort through common challenges and just support our overall mental health in what can sometimes be very challenging work.

The Parking Lot, is an informal space for support and collaboration with the overall goal of taking time for ourselves just to breathe and chat. It's intentional self-care and a way to build your support community.

FER Ideas Incubator 🌟

Next Event: May 13, 7pm EST

Join us for the FER Ideas Incubator, a monthly online event where creative minds come together to share and develop innovative ideas. Whether you're a person with lived experience, a researcher or trainee many of us have ideas that would improve or support the work of engagement in healthcare or health research. What can sometimes be missing is the opportunity to sit down with like-minded individuals and innovate together. 

The ideas incubator is a dedicated space to connect with others and utilize our collective skills to drive new ideas and innovations forward. 

Join us the second Monday of every month as we seek out new ideas and work at how we can share and showcase generated innovations.

Relationship Building in Family Engagement: Building Trust as a SciComm

Wednesday, May 1, 2024 7pm EST

In this webinar we will dive into considering why building relationships in family engagement through a lens of science communication matters. Join us on Wednesday, May 1, 2024 at 5:00 PM (Mountain Daylight Saving Time) as we explore strategies for fostering trust and collaboration within families through this unique angle. Join Rae Martens as she reflects on her time having challenging conversations in an era of misinformation and what she's learned in the process about engagement because of it. Register now to secure your spot!

Did you know that the Family Engagement Program has a blog on engagement? You can read and subscribe here.

The team is currently seeking researchers and partners who may wish to share their experiences, or best practices.

This is an opportunity for us to learn from you!

Submissions can be sent to Rae at martensr@mcmaster.ca

(1000 words maximum. Themes can vary.)

FER in the Community

KBHN Outstanding Awards 2023-2024 Winners

Congratulations to all winners including those from the FER Community!

The KBHN National Training Program, dedicated to fostering innovation and progress in addressing neurodevelopmental disabilities in children and supporting their families, has announced the winners of its Outstanding Awards for the year 2023-204. These awards aim to recognize and celebrate individuals who have demonstrated exceptional dedication, innovation, and leadership within the KBHN network.

Outstanding KBHN Mentor / Supervisor Award 2023-2024: 

Dr. Sarah Munce

Outstanding KBHN Mentor / Supervisor Award 2023-2024: 

Dr. Michelle Phoenix

Outstanding KBHN Leadership Award in Family Engagement in Research 2023-2024:

Amanda Doherty-Kirby

Outstanding KBHN Leadership Award in Family Engagement in Research 2023-2024: 

Connie Putterman

Outstanding KBHN Promising Researcher Award 2023-2024:

Samantha Noyek

Strategy for Patient Oriented Research Community Meets

FER Course graduate Sharon McCarry meeting at the Canadian Institute of Health Research offices to discuss leadership priorities with SPOR leaders from across Canada.

McMaster Child Health Research Day charts the future of pediatric health

More than 130 Health Sciences students, patient family members and special guests gathered to celebrate innovative research and compete for awards this week at the McMaster Child Health Research Day. Many FER graduates and team members represented during such an epic day!

7th Annual Cerebral Palsy Research Network Investigator's Meeting

FER Team members Dr. Andrea Cross, Donna Thomson and Sara Pot recently had the opportunity to share about family engagement in research during this important event.

Now Recruiting

Apply to Be a Member of the CIHR's Institute Advisory Board 🌟

Want to play a role in shaping health research priorities in Canada? CIHR is currently accepting applications for Institute Advisory Board members.

Learn more and apply today!

Compensating Patient Partners in Health Research in Canada 🌟

Psychosocial Health and Well-being in Families of Children with Support Needs Following the Covid-19 Pandemic 🌟

Have a milestone that you're celebrating? Let us know! Email Rae Martens at martensr@mcmaster.ca

Now Hiring

Program Lead, Patient Safety, Equity & Engagement

The Program Lead supports the planning and delivery of HEC’s programs, collaborative education and improvement initiatives; conducts literature reviews and environmental scans, evaluation, and analysis (including data analysis and interpretation); prepares reports, briefing notes, and other program documents; and coordinates meetings and events.

Leadership Opportunities

Lived Experience Leaders and Advocates: Consider Pitching an Article for the British Medical Journal 🌟

To mark 10 years of commitment to patient partnership and over 20 years since our first patient theme issue, we will publish a special issue of The BMJ led by patients on 13 July 2024. We expect that most of the content will be written by patients or led by their views, including education articles, editorials, opinion pieces, and essays. We will make clear how patients were involved in each article to help showcase the various ways that we create patient partnership within our content.

We are keen to ensure this issue is curated by a range of patients with diverse experiences from diverse backgrounds, and welcome commissioning ideas. 

Learning Opportunities and Resources

Connecting Communities: Addressing Opportunities to Improve Experiences, Services and Care Within and For the Autism Community 🌟

June 13-14, 2024 Livestream Available

Registration is live for Autism Alberta's Alliance Event - Connecting Communities! For more information and to register, click the button below.

Health Data for All of Us 🌟

Tuesday, April 23

Health Data for All of Us: Earning Trust Through Transparency is HDRN Canada's second annual hybrid public forum for researchers, community groups, members of the public and policymakers to engage with topics related to health data access and use in Canada. Learn about HDRN Canada's areas of work and participate in discussions about the issues of trust and transparency in the use of health data in Canada.

This event will take place on Tuesday, April 23 via Zoom and in-person at Le Westin Montreal.

Motivations for Being a Patient Partner in Research 🌟

May 9, 2024 4:00 PM EST

The webinar series is all about patient engagement in health research, also known as patient and public involvement (in the UK) or consumer involvement (in Australia). 'Patient engagement’ in health research is where patients are research team members. This is different from volunteering to be a research participant where you might help advance research or healthcare, but a research participant generally does not give input into the research study itself.

Help Shape the Future of Healthcare for Kids in Canada 🌟

Children's Healthcare Canada is on a mission to Right-Size Child and Youth Healthcare! But we can't do this alone, we need the collective action of our members, family partners, youth and strategic partners to meet our vision of accessible, equitable, connected healthcare services designed for the needs of children, youth and families in Canada.

Register for one of three Townhalls today to learn about our recommendations, and what actions we can take together.

We know better is possible. Canada is a wealthy country with all the resources necessary to improve children’s health outcomes. By mobilizing strategic partnerships from all levels of government, advocacy, and the health sector, coordinating the deployment of new resources with a focus on children’s health, and creating leadership for change, we can move beyond bandaid solutions to create healthcare systems fit for kids. 

How do you know if you are making a difference? A practical approach to understanding and tracking your impact 🌟

May 14, 2024 07:30 AM EST

If you’re struggling to bring together and evidence the story of your work, and report on it well, join Sarah Morton for this webinar that will introduce our practical and meaningful approach.

What you will gain from this webinar

- An orientation to the challenges of understanding and capturing impact.

- Information about methods and approaches that are tried and tested.

- An understanding of how to develop approaches that are suited to your work and its challenges.

- Practical tools and ideas you can start using now.

- A chance to ask our expert team about the particular challenges you face.

Patient Engagement 101 Workshop

June 19, 2024

The patient engagement (also referred to by other terms, including patient partnership) workshop is designed to support trainees with the necessary skills and knowledge to feel more comfortable about the concepts and practice of patient engagement in research. The goal of the workshop is to foster best practices in patient engagement through a hands-on exercise and interactive learning that can be applied to research projects.

More specifically, the objectives of this workshop are to:

• Enhance trainee knowledge and understanding of patient engagement in research, where patients are partners on the research team, not volunteer participants in a study.
• Increase trainee capacity to actively engage patient partners throughout a research project.
• Develop trainee understandings of patient engagement best practices.

Successful applicants will be given the opportunity to attend the Patient Engagement in Research 101 Workshop in Halifax, NS.

The Basics of Patient/Youth/Caregiver Engagement in Clinical Trials 🌟

Join us for our first IMPaCT webinar focused on youth and family engagement in pediatric and perinatal trials. Hear from IMPaCT parent partner Yan (FER graduate and instructor) and youth partner Jenna and from patient engagement specialists Maureen and Dawn! 

Resources On Engagement

Saskatchewan SPOR: New Linking Platform for Opportunities 🌟

For years, Saskatchewan patients and research teams have connected through SCPOR’s Patient & Researcher Connection Site. And now, there’s a new site in town - meet PEARL!

SCPOR and Saskatchewan Health Authority have teamed up to introduce PEARL - the Patient Engagement And Research Link - a new way for:

• patients to learn about research topics they’re interested in, and 
• research teams to find patients to partner with or participate in their projects! 

Patient and public involvement trauma informed guidance for organisations and healthcare professionals 🌟

Many people have experienced psychological trauma, as children, as adults, or in connection with healthcare experiences. This means that sometimes recounting experiences or contributing to research as a patient and public involvement partner or talking with healthcare professionals, can be distressing and can trigger memories from the original experience. 

This guidance is intended for healthcare professionals, staff who work in patient experience roles, healthcare organisations, researchers and any others who interact with service users and their relatives who are giving insight and feedback through a patient and public involvement process. It offers guidance on how to work with patient and public involvement partners in a way that is both psychologically and trauma informed.

‘It's Powerful’ The impact of involving children and young people in developing paediatric research agendas: A qualitative interview study 🌟

There is a growing consensus that children and young people (CYP) should be involved in matters that concern them. Progress is made in involving CYP in developing pediatric research agendas (PRAs), although the impact of their involvement remains unknown. We aimed to evaluate the impact of involving CYP in developing PRAs and assess the extent to which postpatient and public involvement (post-PPI) activities were planned.

Featured FER KT Tool

Trauma-Informed Practice in Family-Engaged Research 🌟

Publications on Family Engagement

Studying How Patient Engagement Influences Research: A Mixed Methods Study 🌟

There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence.

Emotion in public involvement: A conceptual review 🌟

Experiential knowledge can aid in designing research by highlighting what an idea looks like from a patient and carer perspective. Experiential knowledge can be emotional, and this can create challenges at formal research meetings.

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