CHILD-BRIGHT Researchers Featured in CIHR's Canada 150 Ranking

Congratulations to Drs Annette Majnemer, Steven Miller, Prakesh Shah and Wendy Ungar, four leading CHILD-BRIGHT researchers, for being featured in the CIHR Celebrates Canada 150 compilation. This compilation highlights health researchers and partners in Canada who are changing lives and making an impact for (and with!) patients nationwide. Read more about their work below.

Congratulations to all other researchers and teams profiled in this wonderful compilation. The future of Canadian research is bright!

Annette Majnemer
CHILD-BRIGHT Director and Principal Investigator

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Steven Miller
CHILD-BRIGHT Co-Director & Principal Investigator

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Prakesh Shah
CHILD-BRIGHT Principal Investigator

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Wendy Ungar
Co-Lead, CHILD-BRIGHT Health Economics

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A Successful First National Gathering: Brain-Child-Partners Conference 2017

From November 6 to 8, 2017, researchers, youth, family members, health professionals, educators, policy makers, and all interested in partnering to advance research in brain-based developmental disabilities gathered in Toronto for our first national conference, the Brain-Child-Partners Conference 2017

Co-hosted with Kids Brain Health Network, the Brain-Child-Partners Conference brought together 302 people touched by childhood neurological disabilities and, under the theme of ‘Reciprocity’, we listened, collaborated and exchanged, with the goal of positively impacting each other’s work.

An Active Exchange of Ideas

The event programming was designed to encourage an open and reciprocal exchange of ideas, and we were thrilled to see this unfold! Active dialogue took place on topics such as advances in brain research, mental health, helping families navigate transitions, patient engagement, effective communication channels, the cooperation between basic and applied research, and so much more. View the full event programming here. Thank you to all speakers and participants for this lively and productive exchange of ideas!

Up-and-Coming Researchers

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Young researchers and trainees presented their work, met and exchanged with experts in their fields, and took part in a poster competition. Congratulations to the Trainee Poster Award recipients: 

Theme 1: Disease Modeling and Etiology
Awarded to: Jelena Popic, PhD
Postdoctoral Fellow - McGill University
"Metformin rescues impaired behaviors, dendritic morphology and downregulates ERL signaling in Fragile X Syndrome mouse model"

Theme 2: Diagnostic and Screening Tools
Awarded to: Zach Boychuck, MSc (OT) 
Doctoral Student - McGill University
"Partnering with parents & primary care providers: Using consensus methods to determine the early signs that should PROMPT referral for diagnosis of cerebral palsy"

This is the start of something new. Where our voices matter.
— Symon Hay, Patient Representative

Theme 3: Interventions
Awarded to: Alicia Hilderley, MSc
Doctoral Student - University of Toronto
"Changes in sensorimotor functional connectivity following gross motor training for children with diplegic cerebral palsy"

Theme 4: Social - Community
Awarded to: John Aspler, BSc
Doctoral Student - Institut de recherches cliniques de Montréal
"What we say matters: Stakeholder perspectives on media coverage and public understanding of fetal alcohol spectrum disorder"

Theme 5: Partnership
Awarded to: Julia Hanes, BSc
Research Assistant - McMaster/CanChild
"Engaging Youth and Researchers: A collaborative video project to spread awareness on the #F-words"

National Visibility & Engagement

An active dialogue also took place outside of the meeting rooms, on social media and in post-conference publications. Read a few here:

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See what people had to say on social media about our conference

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It's time for Canada to measure up on kids with disabilities
(Toronto Star, November 12, 2017)

by Stephanie Dunn and Jennifer Zwicker

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Some of my takeaways from the Brain-Child-Partners Conference 2017

by Jessica Geboers

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Shut Up and Listen

by Sue Robins

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Reflections on our theme of reciprocity

by Kids Brain Health Network

 

We wish to thank all attendees for their active participation and involvement in our network. Because of you, our first national gathering was a resounding success!

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Meet 2017 Summer Studentship Recipient: Simon Robins

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Simon Robins, one of our 2017 Summer Studentship recipients, and read his reflections on his time at CHILD-BRIGHT.   

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Name: Simon Robins
Studying: Master of Library and Information Studies, UBC
Focus of summer internship:
CHILD-BRIGHT Optimizing the Management of Pain and Irritability project

 

"Through the CHILD-BRIGHT summer studentship program, I’ve been able to assist my research team in developing an outreach strategy which ensures successful knowledge translation of our research process and outcomes to a broader audience through a new website. The research project being communicated is titled “Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairments,” and is led by Dr. Hal Siden. This study evaluates the assessment and management of pain and irritability in children with neurological impairment. This is a randomized, multi-site trial of a clinical pathway to focus and streamline the evaluation and assessment of this population.

I made sure to keep in mind the importance of creating a website which is oriented towards patients and their families and is easily understood by non-academics.

To effectively translate this online knowledge and revise existing content on Dr. Siden’s past projects, I relied heavily on the patient-oriented research articles and the webinar discussions from the summer studentship program. Above all, I made sure to keep in mind the importance of creating a website which is orientated towards patients and their families and is easily understood by non-academics. I primarily achieved this by implementing a user-friendly design and by testing our content on our Family Advisory Committee (upcoming).

For the bulk of my project, I re-designed and drafted new content for PedPalASCNET's website using WordPress. To begin, I reviewed existing content from other lab websites, and drafted content based on trends I found. I then planned interviews to gather families’ stories on their experiences participating in our research, and to test the early designs and content to make sure that they are usable and understandable. Focus groups have been scheduled to gather similar feedback from families.

In addition, I managed PedPalASCNET’s social media/mailing lists. This work with social media directly informed our ongoing outreach strategy by allowing me to analyze our twitter data, our website usage through Google Analytics, and the analytics on our MailChimp emails. We made an effort to find twitter users who identified as families of sick children and track which tweets were popular. As a result, the research network now has a better sense of what the research and patient communities engage with the most, and we have tailored our web content according to these trends.

I will continue to involve patients and caregivers when designing the information resources which are meant to serve them and their health providers.

As a library and information studies student I am highly interested in outreach and scholarly communications within academic libraries and research networks, and I feel I have gained greater exposure to this type of work by helping to redesign the website and conduct outreach through social media and patient interviews. Through weekly tweets and retweets about current event articles and the latest academic research, I feel more confident about my ability to generate engagement and attract new followers within the research, patient, and caregiver communities. I also feel more confident about my ability to translate knowledge within websites by employing user-centred design and by framing complicated research topics into language that is easier to understand. This above all depends upon caregiver and patient feedback.

In the future I will continue to involve patients and caregivers when designing the information resources which are meant to serve them and their health providers."

 

Meet 2017 Summer Studentship Recipient: Chelsea Yeo

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada. Meet Chelsea Yeo, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

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Name: Chelsea Yeo
Studying: BSc (Psychology), St. Francis Xavier University
Focus of internship:
CHILD-BRIGHT Strongest Families Neurodevelopmental project

"The opportunity I had to work on the Strongest Families Neurodevelopmental CHILD-BRIGHT research project opened my eyes to patient-oriented research and what it involves. I learned from collaborating with parent advisors, synthesizing their thoughts and ideas, and learned about the program's themes. Not only did this studentship give me the opportunity to experience a different type of research process, it helped me to see its value.

Everyone has a story that makes their experiences, ideas and thoughts unique.

As a young career-minded individual, I believe that working on the SF Neurodevelopmental project reinforced my pre-existing beliefs concerning the value of others’ experiences and will help me in my career going forward. Everyone has a story that makes their experiences, ideas and thoughts unique. This speaks to the importance of being open and able to listen.

Hearing the stories and speaking with parents about obstacles they’ve overcome allowed the intervention to be more specific to the needs of children with disabilities and their families. Specifically, there were many things that these parents experience that can’t be found in a book that made their advice invaluable to our project.

Going forward I will apply this lesson to my career path but also to life in general."

Meet 2017 Summer Studentship Recipient: Elisa Lau

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Elisa Lau, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

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Name: Elisa Lau
Studying: BSc (Integrated Sciences with a focus on Genomics and Neurobiology), UBC
Focus of summer internship:
CHILD-BRIGHT IMAGINE project

"I’ve learned so much over this past summer. 

In May I was invited to join the Friedman Lab at UBC as a research assistant on the IMAGINE project, which is a diagnostic study aimed at finding genetic causes for atypical cerebral palsy. It was an amazing opportunity to gain research experience within a clinical setting, and work with a complex team of health care specialists. This was especially valuable to me because I hope to pursue genetic counselling after completing my undergraduate education. 

I was also given the opportunity to design an information tool to describe metabolomics to the lay public.

I was fortunate to become involved in IMAGINE right from its beginning. This allowed me to not only directly witness the process of shaping an international research project, but also assist in many of its aspects. My mentors guided me through data handling, clinical chart reviews, specimen collection, presentation skills, and how to properly and respectfully interact with patients and their families.

I was also given the opportunity to design an information tool to describe metabolomics to the lay public. Having just completed an introductory cell biology course in the spring, it was quite the learning curve! Clinical knowledge aside, as an unseasoned student worker, some of the most mundane tasks like juggling a spreadsheet, or planning an effective filing system for data presented as unexpected little challenges to me. 

I learned firsthand that genetic counsellors can be researchers, writers, educators, project managers, and so much more.

Working with the Friedman team completely expanded my view of the genetic counselling profession beyond the limited scope of the information available online. I learned firsthand that genetic counsellors can be researchers, writers, educators, project managers, and so much more. It is a new and evolving field, and I am very excited to hopefully be part of it in the future. I am thankful to the CHILD-BRIGHT Network and everyone at the Friedman lab for providing me with this studentship experience." 

 

Meet 2017 Summer Studentship Recipient: Liel Cohn

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Liel Cohn, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

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Name: Liel Cohn
Studying: BSc (Life Sciences), McMaster University
Focus of internship:
CHILD-BRIGHT Training Program

"The CHILD-BRIGHT Summer Studentship  provided me with the incredible opportunity to learn about new developments in research and the importance of patient involvement. Through engaging webinars and interesting readings, not only did I gain a new perspective but I also developed tools that will help me incorporate patient-oriented research into my current and future research endeavors.

By educating patients and their families properly, and involving them in the research projects, physicians and scientists are able to provide what seems to be the most effective care, leaving the patient feeling more comfortable and confident than ever before.

For my final project, I received the task of constructing a Venn diagram that compares and contrasts patient-oriented research with traditional health research. This project helped me recognize the faults in the traditional methods, while also highlighting the challenges in properly incorporating patient-oriented research in common practice. Despite being challenging, I now feel that patient-oriented research is the future model for research studies and is essential in promoting and developing the concept of individualized medicine.

Overall, this experience has further established my interest in patient-oriented care and research in the health care field."

Meet 2017 Summer Studentship Recipient: Shannon Morrison

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Shannon Morrison, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

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Name: Shannon Morrison
Studying: Master's (Social Work), McGill University
Focus of internship:
CHILD-BRIGHT Strongest Families Neurodevelopmental Project

"This summer I had the opportunity to not only learn about patient-oriented research through the CHILD-BRIGHT Student Fellowship but to also experience how this type of research is done through my involvement with CHILD-BRIGHT’s Strongest Families Neurodevelopmental Team.

I feel that I cannot proceed with future projects without thinking about who I should be talking to from the community.

The value of hearing feedback from families and patients who are able provide comments on the direction, goals, and methods of a project that are grounded in their lived experience has been undeniable. This experience will affect any future research endeavors.

I feel that I cannot proceed with future projects without thinking about who I should be talking to from the community where the research will be based and how to incorporate their thoughts and ideas into the project so that it can create outcomes that are meaningful and useful for their community. "

Meet 2017 Summer Studentship Recipient: Brett Paffrath

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Brett Paffrath, one of our 2017 Summer Studentship recipients, and read his reflections on his time at CHILD-BRIGHT.

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Name: Brett Paffrath
Studying: BSc (Biology), University of Calgary
Focus of internship:
CHILD-BRIGHT Enhancing Brain Function with Non-Invasive Stimulation Program

As a studentship recipient for the CHILD-BRIGHT Network, I worked with the Calgary Pediatric Stroke Program (CPSP) team at the Alberta Children’s Hospital as part of the Enhancing Brain Function with Non-Invasive Stimulation project. This summer not only taught me the skills to succeed in the research world, but also caused the discovery of my true-self.  My experiences this summer changed my life forever.

More specifically, I worked on a project on "Source Localization of Pediatric Brain-Computer Interface (BCI) using Electroencephalography (EEG)." My project taught me numerous clinical research skills, including experimental design, data collection and management, method development, statistical analysis, and presentation. However, to me, the most important part of the experience was how much it allowed me to grow as a person and become comfortable with myself.

My work with the CPSP team was an enormous eye-opener to the scope and magnitude of patient-oriented neuroscience research. I cherished the exposure I had to so many academic paths, with the cross-over of a multitude of interesting departments such as Neuroscience, Bioengineering, Computer Science, Occupational Therapy, and more. Having an extensive history with computers and a love for understanding biological data, biotechnology and bioinformatics really peaked my interest for future career paths.       

There was so much satisfaction gained from seeing a child, who had been working so hard for weeks on a goal that he had outlined, finally achieve his dream.
— Brett Paffrath

While I was never directly involved with participants for my own study, as I was responsible for the data analysis portion of the project, I had plenty of opportunities to interact with patients of other CPSP studies and I gained a great appreciation for patient-oriented research and its benefits. There was so much satisfaction gained from seeing a child, who had been working so hard for weeks on a goal that he had outlined, finally achieve his dream. 

Working in the lab, I had not colleagues and bosses, but friends and mentors. Immediately, I felt accepted into their circle and loved every moment with the close-knit community. The pleasantness of my experience on my amazing project with my wonderful team, has massively boosted my own intellectual and social abilities and removed all doubts I had about my future.

I cannot thank the CHILD-BRIGHT Network and every member of the CPSP enough for allowing me this amazing opportunity that has truly changed my life for the better.

New Partnership to Advance Building Capacity in Patient-Oriented Research

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CHILD-BRIGHT is pleased to announce a new partnership with the Canadian Child Health Clinician Scientist Program (CCHCSP), Ontario Child Health Support Unit (OCHSU), and the BC SUPPORT Unit, to support the development of a Patient Oriented Research Curriculum in Child Health (PORCCH). Together, as part of this new partnership, CHILD-BRIGHT will support the development of five novel online modules in patient-oriented research in child health, with the first of these expected to launch in early 2018. 

PORCCH is a collaborative effort funded through the Ontario SPOR SUPPORT Unit Working Group for Training and Capacity Building that involves patients and families, health care professionals, clinician scientists, and education researchers and aims to build an interactive online curriculum on patient-oriented research to better train Canada's next generation of researchers as well as patient and family research partners. 

CHILD-BRIGHT, the BC SUPPORT Unit, OCHSU and CCHCSP share a common objective in advancing patient-oriented research training in Canada. 

The Canadian Child Health Clinician Scientist Program (CCHCSP) is a training program currently composed of 17 participating Child Health Research Training Centres that is dedicated to training the next generation of child and youth scientists within an interdisciplinary framework. CCHCSP provides support for these highly qualified child health clinician candidates to develop their requisite knowledge and skills.

The Ontario Child Health Support Unit (OCHSU) – co-located at SickKids and CHEO – supports patient-oriented child health research in Ontario. At SickKids, a Clinical Trials Unit provides methodological expertise in innovative clinical trials and health economics; at CHEO, a Data Hub provides methodological expertise in the acquisition and management of routinely collected health and social data. OCHSU provides methodological support, leads capacity-building initiatives, and has developed data platforms to support child health research across Ontario. 

The BC SUPPORT Unit is a multi-partner organization created to support, streamline and increase patient-oriented research throughout British Columbia. The Unit is one of 10 SUPPORT Units established across the country as part of Canada’s Strategy for Patient-Oriented Research (SPOR) led by the Canadian Institutes of Health Research (CIHR).

To read more about CHILD-BRIGHT’s mandate under CIHR’s SPOR initiative, click here.

2016-17 Report to Community Now Available

The CHILD-BRIGHT Network Report to Community for the fiscal year ending March 31, 2017 is now available. 

A special thank you to our financial partners for their ongoing contributions and commitment, and to all the patients, families, committee members, and CHILD-BRIGHT supporters who guide us in our work.

Our Report to Community is also available in French

Where does the money go? TEDxYorkUSalon talk by Wendy Ungar on Health Econonics

Wendy Ungar, Co-Lead of CHILD-BRIGHT's Health Economics team, Senior Scientist at SickKids and a Professor at the University of Toronto, presented a Researcher Lightning Round talk following the TEDxYorkUSalon AutismInnovations on April 22, 2017 on the science of Health Economics. Watch 'Where does the money go? Shifting the curve in early autism intervention'

Engaging Youth in Research: CHILD-BRIGHT and KidsCan

Youth engagement in the research enterprise has been growing in prominence over the last number of years. Multiple regional Young Person’s Advisory Groups (YPAGs) have become established not only to raise awareness of research studies that target youth, but to be actively engaged in the research process by providing input into study protocols and influencing research priorities aimed at the pediatric population. 

Due to the unique perspective that these groups possess, CHILD-BRIGHT has partnered with KidsCan, the YPAG based out of the British Columbia Children’s Hospital Research Institute. The unique perspective of KidsCan advisors is expected to strengthen the pediatric focus of our Network’s research projects as well provide invaluable feedback on how to more meaningfully engage with youth and build research capacity.

The Training Core has been fortunate to engage with KidsCan over the last few months. In December of 2016, CHILD-BRIGHT collaborated with Can-SOLVE CKD and piloted a module of CIHR’s Patient-Oriented Research workshop (“Introduction to Health Research in Canada”) to a current group of Advisors. The session was intended to solicit feedback on practical strategies that can be employed to make the material more accessible to youth aged 13-18. After piloting the material, an intense hour-long focus group delineated a set of suggested practices that would lead to designing a more interactive and engaging workshop targeted at youth.

In February of 2017, the Training Core had the opportunity to employ the suggested recommendations and design an interactive workshop to orient newly recruited KidsCan advisors to the basic tenets of health care research in Canada. Participants were oriented as to how research projects unfold, how basic biomedical research differs from clinical research, and the role that ethics and peer review play in the process. Through this workshop, participants were further challenged with how the principles of patient-oriented research will play a role in Network-wide research projects to engage patients as partners.

Throughout the training session, it was clear to the facilitator that these youth are not only highly engaged, but strongly committed to having their voices represented at the table to influence research agendas that impact the pediatric population. Together, researchers and representatives from KidsCan will be able to roll out research projects that more meaningfully engage with youth through various stages of the research process. 

Helping Ella Enjoy Life

“My daughter Ella is all rainbows and lollipops! She is always giggling and makes me so happy. But life as a single mom of three children, including one with special needs, is not always easy. I often feel quite lonely.”

Alyssa Keel lives in the Toronto area and is mom to three young children. Big brother Braeden is four years old, and twin sisters Raegan and Ella are three.

 
I want all three of my children to play and have fun.
— Alyssa

“Raegan and Ella are rare mono mono twins; monochorionic (meaning they shared the same placenta) and monoamniotic (meaning they shared the same amniotic sac). They were born premature at 29 weeks of gestation, and weighed only two pounds, 4 ounces and two pounds, 10 ounces at birth. They spent 80 days in the NICU at Sunnybrook,” says Alyssa.

“I gave birth via emergency c-section. Raegan was born first but it took longer to get Ella out. She suffered a grade 4 (severe) brain bleed. They warned us that it was likely she wouldn’t survive, and a few days later, she almost died. But she pulled through and now, three years later, she is a sassy, strong-willed preschooler!”

But Ella’s birth experience left her with special needs.

“Approximately one week after birth, Ella was diagnosed with hydrocephalus (a condition where there is an abnormal accumulation of cerebrospinal fluid in the brain). And shortly after her first birthday, she was diagnosed with cerebral palsy. She cannot walk, sit unassisted, or stand. She needs lots of support and equipment.”

“It’s a lot of work but my kids make me happy. I’m also very lucky to live in a big city where Ella can attend a special needs preschool, and where we are close to hospitals like Sunnybrook and SickKids. But my experience has changed my dream of what it would be like to have three kids. I’ve had to adapt, and I often feel very lonely. I don’t fit in. Most single moms don’t have as many children as I do, and many don’t understand the challenges I face with a special needs child. It’s hard to join their activities. For example, in the winter, they like to meet at indoor play centers, but the slides and games aren’t accessible to Ella. I want all three of my children to play and have fun.”

“It’s not easy to find accessible places, and finances in general are also a challenge, but I want Ella to have fun, to enjoy life, and to play in the park too. I do everything I can to help all my children live life to the fullest.”

Why CHILD-BRIGHT Matters to Me
“CHILD-BRIGHT matters to us because our story is only one of many; each family has a unique voice and story to be told, and in doing so, we open the possibilities of helping other families and children with different abilities. I always hope that our story will connect us with those families with similar stories, so that we can all feel understood and valued. It is my hope that the difficulties my children may face or that our experience navigating the system may help other families in the future, so that one day brain injuries, and cerebral palsy, will no longer feel so isolating.”

New Roles for Families in Research to Improve Child and Youth Health

By Frank Gavin, National Liaison, Canadian Family Advisory Network & CHILD-BRIGHT Citizen Engagement Council Chair

For a long time (at least a few decades) families, mainly parents, have contributed to research focused on children’s health in two main ways: by consenting to and facilitating the participation of their own children as research subjects and by responding to surveys, questionnaires and interview questions, thus making themselves research subjects, an odd term since in both situations those who are called “subjects” often feel themselves regarded as “objects.”

Increasingly in the last decade or so—and accelerating very quickly in the last few years—patients and families have been invited and encouraged to participate in quite different capacities in health research, particularly as advisors and as co-investigators. This has been an international movement. (Check out, for instance, INVOLVE (http://www.invo.org.uk/ ) in the U.K. and the Patient-Centered Outcomes Research Institute (http://www.pcori.org/) in the U.S. In Canada the Canadian Institutes for Health Research’s (CIHR’s) Strategy for Patient-Oriented Research (http://www.cihr-irsc.gc.ca/e/41204.html) is the largest and best-known (but far from the only) driver of patient—a term that in this context includes the family members and other informal caregivers of patients—participation in all aspects of the research process.

The extensive and often deep involvement of patients in research is intended to ensure that the research directly addresses the needs and priorities of patients and has an important impact on their health and on the health of the system they depend upon. Patient-oriented research makes extensive use not only of the lived experience of patients but of the range of skills, interests, and areas of expertise that patients possess. It requires true partnership and collaboration.

The New Roles

Before identifying what can get in the way of such partnership and collaboration and what families and researchers can do to overcome the barriers, I’ll list some of the new roles family members have begun to play. (Note that in all these roles they are not working alone but with other research team members.)

  • Identifying potential topics
  • Ranking potential topics in order of importance, urgency, or relevance
  • Refining research questions
  • Asking questions, especially “why” and “how” ones
  • Ensuring the language used is understandable—and not alienating—to patients and families
  • Helping to recruit other patients and families as team members
  • Mentoring new patient and family team members
  • Mentoring researchers inexperienced in partnering with patients in this new way
  • Suggesting ways of recruiting patients and families as research subjects
  • Identifying ways to ease the anxiety and confusion of patients and families who are completing questionnaires and surveys (leading to more considered, less guarded responses), e.g. by indicating why particular questions are being asked, who will be using the information provided, who will and will not have access to it, and what use will be made of it in the short and long term.
  • Participating in some interviews as interviewers
  • Selecting the tools or measures (perhaps especially related to quality of life) that will be used
  • Analyzing the information / data gathered
  • Identifying the most effective ways of communicating information / findings to the public, especially patients and families
  • Participating in knowledge translation (KT) activities
  • Participating in advocacy activities, especially for policy and decision makers, arising out of the research findings / recommendations

Problems and Solutions

Here is a partial list of problems or barriers both families and researchers face in making their partnership effective and some solutions:

Being Representative of Families: Family members engaged in patient-oriented research and sometimes in other kinds of research are often explicitly or implicitly regarded as representative of other families. Sometimes they regard themselves in this way, in some cases slipping into such a role. Not being very careful about being a “representative” can be dangerous. If asked to represent other families, ask yourself and your team members how you can have the kind of regular access to a range of families that will help you be more truly representative. Even then, think carefully of what families you cannot—probably for a variety of reasons—contact or represent. It also helps to make sure there are at least two family members on each team. Among other benefits, this reminds everyone that there are many family experiences, perspectives, and voices and not a single patient or family voice or story.

Time and the Pace of Research: Many if not most research projects can take several years to complete. And there are often long periods (e.g. during the time ethics approval is being sought or while data are being collected) when family members of teams may have little if anything to do. These “time-related” realities should prompt everyone to recognize that some family members may be able to play their roles for only a portion of the research project or may have to change their roles. There should also be an explicit plan and a designated “go-to person” to insure family members aren’t left out of the loop during periods when they have little to do.

The Language of Research: The language of research might be more specialized, i.e. more unfamiliar to most people, than the language of a particular scientific discipline. Ordinary words, e.g. power, bias, control, etc. don’t have their usual meanings. Some researchers seem to love speaking in code; some have a hard time using plain language, understandably worried, perhaps, that something important will be lost or distorted. Obviously, highly specialized language can be a barrier to people new to this world. Glossaries can help, but more helpful is an explicit commitment to respond readily and un-condescendingly to requests for “translations” or plain-language terms. Families should also be willing to learn some of the more important and frequently used specialized terms since doing so may help them better understand the work they are part of.

Research Methodology: Researchers are often focused on methodology (e.g. sample sizes, inclusion and exclusion criteria, degrees of uncertainty, the sequences of tests, etc.). Researchers can make methodology less opaque by preparing some simple explanations of the most important elements of research methodology, by referring family members to existing accessible resources, by participating in training sessions where they can explain to patients and families why the “how” is so important, and by answering  questions clearly and collegially. It’s important that such sessions not be “front-loaded” but rather spaced out over the course of the project. Too much information at the start can be more than daunting.

The Place of Stories / Lived Experience: Families sometimes report getting contradictory signals about the place or relevance of their own—or their child’s—experience. They are sometimes encouraged to join because of their “rich lived experience” and then surprised, disappointed, or hurt when they are not invited to contribute or even refer to that experience or when their recounting of part of that experience is--or seems to be--ignored or discounted. Researchers should discuss with family members at the outset whether and to what degree their experience, often conveyed through stories, should be explicitly shared. And families should also consider at the start whether they would prefer not to disclose particular parts of their experiences. In short, the place of stories should be determined by all, not assumed.

Disappointing Results: Sometimes—often, in fact—research yields answers different from the answers everyone hoped for. A new treatment or a new way of providing care may be no better and may even be worse than the tried and true, however limited the tried and true is. It’s important to know about this potential for disappointment at the outset and to remind oneself of it during the course of the project. Projects with “negative outcomes” also make long-term contributions.

The “Feel Good” Factor: This is still frequently present in research teams that include patients and families as partners. Patient-oriented research is a new phenomenon and researchers often know that engaging patients and families and having a team that has the attractive look of such engagement are traits funders are looking for and rewarding. All the more reason, then, to make sure the engagement and the work also feel good—and worthwhile—to patients and families. The team should periodically ask what difference this partnership is making to the quality and the applicability of the research. Evaluation tools are needed and are very much in the works.

Role Definition: Family members have sometimes been told their role was “to keep the researchers honest” or to “remind the researchers why they are doing what they are doing” or to be “inspiring.” There are obvious problems with such roles. It’s much more helpful for family members and researchers to discuss the roles family members will play as explicitly and realistically as possible, to review those roles during the course of the project, and to negotiate changes.

Money: Most everyone working within national or provincial contexts now agrees that patients and families who provide advice or act as co-investigators for research projects should not only have their expenses covered (travel, meals, childcare, parking, etc.) but also be given some remuneration for their work. On the other hand, some people, including some family members, would like to see the option to volunteer remain.

As for amounts, there is wide variation and sometimes strong disagreement about what constitutes appropriate remuneration. Should distinctions be made based on how much expertise or experience is required? Will such work become a career for some people? If so, is that a good or a bad thing? Issues related to remuneration are best dealt with early in the process and candidly. They should also be revisited over time. Any project budget should detail remuneration arrangements and indicate clearly which expenses will be covered.

Training

The partnerships (among patients, families, researchers, clinicians, and policy makers) required to make patient-oriented research succeed require much more than good intentions and well-developed social skills. All the participants need some training, some of it undergone together, other parts of it best undergone by patients alone, families alone, researchers alone, etc. CIHR is now developing a foundational curriculum in patient-oriented research and INVOLVE has many training resources on its website. There are two points to emphasize: 1) training should be viewed as an ongoing activity, not just as something that happens at the start of a person’s or a team’s work, and2) while everyone needs some training, everyone can, with experience, also deliver some part of the training, often to individuals playing quite different roles in the research project.

Last Thoughts

Many, probably most, family members who have found themselves in these new roles in health research report experiencing various frustrations and difficulties. In an often highly credentialed world it isn’t easy to feel confident and find one’s voice, and being asked “how do you know that?” when the answer is intimately linked to a painful experience can cause more than discomfort. Still, families can offer—and have offered—what no one else can; they bring a commitment that can fortify others and the whole enterprise; and they, knowing how the elements of their children’s care and of their children’s lives are connected or disconnected, can illuminate both the dark corners and the big picture.

 

 

 

CHILD-BRIGHT at CIHR's SPOR Summit

(Left to right: Christine Marcotte, Dr. Steven Miller, Dr. Annette Majnemer, To Nhu Nguyen)

(Left to right: Christine Marcotte, Dr. Steven Miller, Dr. Annette Majnemer, To Nhu Nguyen)

From October 25 to 27, members of our CHILD-BRIGHT team attended CIHR's Strategy for Patient-Oriented Research (SPOR) Summit in Ottawa, an event that brought together 300 SPOR stakeholders, including patients, federal/provincial/territorial ministries, partners, researchers and clinicians.

A marketplace opened the three-day event, during which time our team hosted a widely visited booth and exchanged with other attendees on the vision and mission of our new network. We were joined by some of our network funding partners and also got to visit the booths and meet other SPOR network members, SPOR support unit staff, and affiliated organization from across Canada and most importantly, families and patients.

Minister of Health Jane Philpott then opened the three-day series of workshops, panel discussions and informal gatherings during which time all attendees learned and exchanged on various issues relating to patient-oriented research.

Attendees on behalf of CHILD-BRIGHT were:

Dr. Annette Majnemer, CHILD-BRIGHT Network Director
Dr. Steven Miller, CHILD-BRIGHT Network Co-Director
To Nhu Nguyen, CHILD-BRIGHT Network Manager
Frank Gavin, patient representative and CHILD-BRIGHT Citizen Engagement Council (CEC) Chair
Donna Thomson, patient representative and CHILD-BRIGHT committee member
Kate Robson, patient representative and CHILD-BRIGHT committee member
Christine Marcotte, patient representative and CHILD-BRIGHT Communications Manager
Denise Lo, SickKids Foundation
Dr. Keiko Shikako-Thomas, CHILD-BRIGHT Principal Investigator, Jooay Project 

“It was a great first event for our network! We got to spread the word about CHILD-BRIGHT, meet some of our funders in person for the first time, and learned a great deal about the inspiring work of other members of the SPOR family.”
— To Nhu Nguyen, CHILD-BRIGHT Network Manager