June 4, 2019
Holland Bloorview launches Research Unlocked: Enabling clients and families to act as conduits to discover for action
Holland Bloorview Kids Rehabilitation Hospital is proud to launch the first in a series of 11 research lay summaries, co-designed and informed by clients and families. Called Research Unlocked: Research Summaries for Families, this unique and novel initiative ensures that the innovative and groundbreaking applied research happening at Holland Bloorview is available and accessible to those it pertains to most. This is the first known effort to co-design a research lay summary template in close partnership with clients, families, knowledge translation experts, and scientists to empower caregivers and families to act as conduits to discover for action.
“The way research is currently shared – academic journals, poster presentations, and conferences – is not optimal for clients and families,” says Christine Provvidenza, knowledge translation specialist, Holland Bloorview. “It’s important for families to have access to this information so that they can make informed decisions about their child’s care. The lay summaries that we have worked on for the past year are written in a lay-friendly and action-oriented way, and address the most pressing needs of our families. We are extremely proud to launch the first lay summary and showcase the incredible, collaborative work that went into creating a resource that will empower families to make decisions about the care and treatment their child receives, and contribute to the way research is shared."
In 2017, a pilot needs assessment found that families feel removed from research findings. Tangible barriers – including inability to access academic journals and complex academic language – limit opportunities for clients and families to understand research findings to inform important health care decisions, and use them in a meaningful way. To address these concerns, the Research Family Engagement Committee (RFEC) challenged Holland Bloorview to rethink how research results are communicated with children, youth, families and the broader community. With funding from the Centre for Leadership; the Evidence to Care team, Bloorview Research Institute (BRI), families, and scientists partnered to create a process to translate research publications into easily-accessible research lay summaries for everyone.
Co-creation efforts yielded an innovative 10-step development process for selecting and developing lay summaries that value family and researcher perspectives equally. The process ensures that each summary maintains scientific integrity while highlighting meaningful and relevant information for families. As per client and family feedback on what they want to see in a lay summary, each summary captures what the study is about, and what findings mean for caregivers in a visually-appealing way. They also include unique elements such as helpful tips, action items, relevant definitions, additional resources, and quotes from parents that are typically not found in other lay summaries.
“Research impacts can be more meaningful when information is shared and studies are talked about with kids and their caregivers,” says Rebecca Nesdale-Tucker, RFEC member. “All families should have easy access to evidence-based studies that serve to create the best lives possible for children and youth. That’s why the RFEC set about creating new lay summaries. We believe that putting research results into user-friendly formats can boost the exchange of knowledge and inform conversations about next steps – for everybody. Research Unlocked helps to make this happen by summarizing findings on treatments, innovative approaches and technologies, and social inclusion for kids of all ages and abilities, within and outside the walls of Holland Bloorview.”
With enhanced access to childhood disability research findings, families are now better equipped to act as conduits to discover for action, bringing information that directly impacts them to the attention of others (including clinicians, teachers, and allies), and to advocate for personalized pathways based on current research evidence. Research Unlocked focuses on connecting the system by ensuring all clients and families have access to research that impacts them most.
Click here for our first research lay summary titled Managing Many hospital moves with an infant.
Stay tuned for the next research lay summary in June by visiting Research Unlocked.