Alstrom Syndrome International was recently selected for the highly competitive Eugene Washington PCORI Engagement Funding Award. We will use the opportunity of the ASI Family Conference in May 2016 to begin involving individuals with Alstrom Syndrome, family members, and other stakeholders meaningfully in sharing and discussing what is important to YOU!
The healthcare research process has traditionally included only scientists and other research-related professionals. ASI strongly believes in the importance of the engagement of nontraditional stakeholders— patients, caregivers, clinicians, and other stakeholders. From topic selection through design and conduct of research to dissemination of results—we can influence research to be more patient-centered, open, and useful, and ultimately lead to greater use of research results by patients and the broader healthcare community.
We will begin the process now with the goal of eventually bringing to the ASI Family Conference topics that YOU indicate are important for your life. You will be hearing more about this as the conference draws near, beginning with a short survey about potential topics of discussion. More information about The Eugene Washington PCORI Engagement Funding Award can be found at http://bit.ly/1idIgtt
We have invited a small group of people with Alstrom Syndrome, Parents, Clinicians, and Research Scientists to form a Stakeholders Steering Committee to help guide the process from beginning to end. However, we need EVERYONE’S involvement and opinions! This engagement process will definitely continue after the conference, as we don’t expect that everyone who has some input to give will be there, and we want to give opportunities for all to participate. We also want people to have a chance to think about and digest what we come up with, and to give further input by whatever style best suits them. As you well know, it is normal and natural for the Alström community to always be engaged. It’s just that now we intend it more systematically and with larger goals in mind. Rather than simply imagining what’s important, or having “experts” decide next steps in isolation, we—the SSC with PCOR’s support—are creating an opportunity to break out of this “top-down” decision-making model and foster a shared responsibility for health between everyone who is involved with Alström Syndrome: affected persons, parents, care-givers, clinicians and researchers alike. “
Don’t hold back – this is a great opportunity to shape the direction of Alstrom Research, Education and Support! We are looking forward to getting started!