Today, I’m excited to announce on behalf of Dysgraphia Life that we are launching a new project funded by the Patient Centered Outcomes Research Institute (PCORI). You can read the full press release here.
Our project, “Building Capacity for Patient Centered Outcomes Research In the Dysgraphia Community” will help promote research that is meaningful to you.
What is the goal?
Our stated project goal is: Build, engage, and educate the dysgraphia community on patient-centered research practices and prioritize research on the most important questions
for people diagnosed and their families to improve health outcomes.
What is Patient Centered Outcomes Research?
Patient centered outcomes research can be defined as the evaluation of questions and outcomes meaningful and important to patients and caregivers (Frank et al, JAMA, 2014). For a neurodiverse community, this means incorporating the perspectives of people who have learning disabilities and/or parents or other caregivers of students with learning disabilities into the entire research process. Including people with lived experience can change and improve research, leading to higher quality studies.
We will be having future webinars to explain more – join our email list to be notified.
What will we be doing?
This project has four key parts:
Grow our community and raise awareness of dysgraphia/specific learning disability of written expression
Teach our community about research, why it’s important, and how you could be involved as part of a research team
Learn how you want to hear from and work with us and with interested researchers
Find out what research topics are most important to you. What should researchers be studying that would make a meaningful difference in your life?
More specifically, we will work with a diverse representation of parents, guardians, and other caregivers of students with dysgraphia in focus groups to understand how to most effectively engage them in research. The team will also work with the broader community (including educators, clinicians, researchers, parents, and people with dysgraphia) in creating a list of research topics that will then go through a Delphi process, a technique used to develop consensus. The overarching project goal is to fully engage the community impacted by dysgraphia in the process of establishing research priorities that will be most beneficial. Long-term, the goal is that future patient centered outcomes research will improve equitable delivery of interventions and improved management strategies for people impacted by dysgraphia.
Who is involved?
I am officially the lead for the project (“Principal Investigator”) and the Dysgraphia Life team, including Amy and Tommia, will all be highly involved.
We also have an amazing Research Advisory Board that includes clinicians, researchers, special education teachers, people with dysgraphia, and parents of dysgraphic students. This Board is providing feedback on all aspects of the project.
And most importantly, you! The project will continue over the next two years and members of our community will be invited to take part and provide input during multiple phases. We will be inviting people for focus groups, interviews, and surveys.
How do I stay updated on the progress of this project?
· We have a new project page on our website where we will be posting updates. You can find it HERE.
· We will be having webinars related to this project twice a year. The first one will be in March/April 2023. All will be free and will be archived on our webinar series page.
· Join our monthly e-newsletter list for updates
We look forward to working with our whole community on this project!