THERAPY
Consumer Advocacy in Autism Research
Autistic Advocate participates in Scientific Peer Review Autism advocate, Karen Krejcha from Vancouver, Washington, recently participated in the evaluation of research applications submitted to the Autism Research Program (ARP) sponsored by the Department of Defense. Karen was nominated for participation in the program by Autism Empowerment and was chosen because of her experience as an autistic woman, a parent of two sons on the autism spectrum and as an advocate and professional in the Autistic and Autism community.
The CDMRP fills research gaps by funding high impact, high risk and high gain projects that other agencies may not venture to fund. While individual programs are unique in their focus, all of the programs managed by the CDMRP share the common goal of advancing paradigm-shifting research. The ARP focuses on improving the lives of those living with autism spectrum disorder (ASD). Through the program’s areas of interest, the ARP focuses on ways to improve diagnosis, treatment and studying psychosocial factors for affecting key lifetime transitions to independence and a better life for those on the autism spectrum and their families. The immediacy of the ARP Vision, to improve the lives of individuals with autism now, has imparted a strong sense of action and continues to steer the investment strategy for the ARP. How do Consumer Reviewers fit in?
As a consumer reviewer for this Congressionally Directed Medical Research Program (CDMRP), Karen was a full voting member, along with prominent scientists, at meetings in Washington DC to help determine how the $7.5 million appropriated by Congress for the Fiscal Year 2016 (FY16) will be spent on future autism research. Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of autism research applications since 2007. Colonel Wanda L. Salzer, M.D., Director of the CDMRP expressed her appreciation for the perspectives of the consumer advocates in the scientific review sessions. “The Consumer Reviewers on each panel are instrumental in helping the scientists understand the patient’s perspective and provide valuable insight into the potential impact of the proposed project. They bring with them a sense of urgency and remind all scientists of the human element involved in medical research.” We recently caught up with Karen after her return from Washington DC to give Spectrums readers more of the details. First, congratulations! What exactly is the CDMRP? The Congressionally Directed Medical Research Programs (CDMRP) originated in 1992 via a Congressional appropriation to foster novel approaches to biomedical research in response to the expressed needs of its stakeholders - the American public, the military, and Congress.
The CDMRP welcomes patients, survivors, family members and advocates to play a pivotal role in the future of biomedical research funding. By integrating “consumers” into the scientific review process, the CDMRP is able to enrich and add authenticity to the scientific review by incorporating personal perspective, passion, knowledge and a sense of urgency. Over 2,000 consumers have served as Peer and Programmatic reviewers since 1995. By partnering with consumers, the CDMRP strives to find and fund collaborative research that discovers, develops and delivers health care solutions for Service members, Veterans, and the American public. Is it common to regularly include autistic and autism family input in Autism Research or proposal review? At the CDMRP? Yes. Elsewhere? Not so much. The CDMRP’s approach is refreshing, respectful and responsible. Hopefully, their transformational approach will get more attention in outside funding circles. There is a popular saying in disability rights and social justice circles, “nothing about us without us.” What that means is that program and policy decisions that impact a certain group of people (e.g. youth and adults on the autism spectrum) should not be made without the full and direct participation of members of the group(s) affected by those policies. Sadly, it is still uncommon for autism researchers to actively seek and include autistic adult input, Continued on next page
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