Grant: Patient-Oriented Research Collaboration Grants

Researchers and clinicians within the CHEO Regional Genetics Program recognize the critical importance of the patient voice in research and care, especially in the field of rare disease. At the same time, patients and families desire meaningful input into their care and rare disease research. The problem is that it is currently not clear how healthcare providers, researchers and patients with diverse experience can connect with one another at the right time for input into research priorities, grant opportunities or decisions about how healthcare services are redesigned. The recent introduction of a continuous improvement system in the Genetics Program gives us an opportunity to use the tools and meeting points to prompt collaboration with patients and families. We just need to engage a base of families and decide together the best way to connect that will meet everyone's needs. We also need this framework to be sustainable in the long term- for patients to be supported and for all participants (including researchers and clinicians ) to pay attention to the outcomes of our efforts, specifically to recognize when changes result in improvement. With this study we will 1) Create a network for ongoing engagement with patients and families affected by rare diseases 2) Engage these patients and families to identify 'touchpoints' in the quality improvement research cycle where patient engagement can and should take place. 3) Work with patients and families affected by rare diseases to identify barriers to effective engagement in quality improvement research, and solutions to overcome the barriers 4) Collaborate with patients and families affected by rare genetic diseases to identify areas that should be subject to quality improvement within the care pathway and 5) Prioritize these and co-design research initiatives that can be taken forward with future research applications.