IMFAR Special Interest Group, 2018
Rotterdam, The Netherlands
May 12, 2018
Summary: On May 12, 2018, the Special Interest Group at the International Society of Autism Research entitled “Promoting Partnerships Between Researchers and Patient Advocacy Organizations” met from 7:15AM – 8:45AM. This year’s INSAR meeting was held in Rotterdam, Netherlands, and approximately 50 people were in attendance at this year’s SIG. Three presentations were made and the powerpoint slides can be found here. The group continued discussion on the importance of patient registries in research with some examples of actions that have been taken since last year’s SIG to advance coordination of existing registries. In addition, a presentation was made about different ways to engage the community on the diagnostic journey as well as about autism research in general. The group then broke out into different groups to tackle the following questions. General needs as well as potential action items are listed at the bottom.
What would a registry which included information from multiple “forms” of autism add? How could it be used?
What would be the most pressing research questions to answer? (from researchers and stakeholders)
How could or should patient advocacy organizations be involved?
What data is not being collected that you think should be?
Communicating with families:
How do researchers typically communicate science to families?
Why do they discuss the findings with families?
Who makes decisions about what to share, and how, and how often, etc.?
From a stakeholder perspective, how is scientific information delivered from researchers used?
What resources do researchers wish they had but don’t have? This includes from first point of contact to years and years beyond.
Shafali Jeste, PhD, of UCLA
Summary of Discussions
Getting families engaged in registries
Flexible tiers of registries, with a basic entry-point that is common to all registries, then more specific questions based on genetic syndrome
Gaps in communicating with families about registries
Short term: complete common data elements, 1 page marketing piece value of registries for families and distributing to PAGs, 1 pager value of research and clinical trials in general for clinicians and families, document for researchers on value of registries
Long term: single portal, toolkit for new groups, they will have a compatible system
SIG breakout group discussing how to improve registries
Communicating with Families:
Direct feedback to families, in the form of either individual or summarized results. There should be easy to read summaries of research that point out how the results are relevant and practical for families
Researchers should continue keeping clinicians and providers informed on the evolving science. This way the information can trickle down.
Open line of communication between researchers and dissemination points. Researchers can either assume the responsibility of being be their own spokesperson or actively work with organizations to ensure their findings are communicated regularly
Accessible, internationally-friendly resources that compile scientific research and evidence for families to read and use, and having clinicians and providers inform patients of these resources
Advocacy organizations serve as the conduits. These advocacy organizations are the “trusted broker” between scientists and families. They can also make sure information is factual and consistent.
Peer to peer (parent to parent, advocate to advocate) communication via ambassador of research dissemination.
Instead of taking the defensive, use dissuasion on social media platforms to counter junk science
Engage notable, trustworthy research institutions and/or patient organizations to dissemination and increase commitment to science translation
Consider the “what does this mean to me” or “what does this mean to families like mine” when communicating research findings
SIG breakout group discussing how to improve communication with families