Autism Speaks Participates in Partnerships for Environmental Public Health Initiative Aimed at Promoting Community Involvement in Research

April 29, 2010

On April 26 and 27, 2010, the Partnerships for Environmental Public Health (PEPH) initiative of the National Institute for Environmental Health Sciences (NIEHS) held its first meeting in Durham, N.C. Autism Speaks was invited to participate in the initiative, which aims to build partnerships and increase communication with the broader community around environmental health concerns.

In the welcoming address, Linda Birnbaum, Ph.D., the new director of NIEHS, quickly set the tone by reminding participants that “environmental public health” is the science of conducting and translating research to address environmental exposures and health risks of concern to the public. Dr. Birnbaum underscored that message by saying that through partnerships we can do better, not just by accepting a lesser burden of disease, but by seeking ways to prevent the causes of illnesses that affect our society. Autism was among the ten priority areas of focus listed in her discussion, with Dr. Birnbaum noting, “NIEHS-supported research has shown that there is more to autism than genetics alone, and that the interaction of genes and the environment must be considered in researching this devastating disorder. Scientists are investigating a number of environmental factors that are known or suspected to influence early development of the brain and nervous system, including exposure to infections, toxins, biological agents, and parental age.”

At the meeting participants learned about programs that actively include communities as partners in collecting data, analyzing it, and delivering results that create environmental public health solutions in those communities. One of the themes of the meeting was a focus on ways that researchers can become part of the community, building the capacity of all involved. The discussions emphasized that data must not be collected for its own sake, but rather for the sake of the concerns facing the community. This connection to the community can only be achieved through the dissemination of results and delivery of solutions to the community participants. Therefore, the meeting focused explicitly on health disparities of certain groups, and how members of those groups might best be reached, with attendees learning methods for training and mentoring citizens to participate actively in research. Participants also learned about grant opportunities specifically aimed at programs that educate the communities about science and deliver results directly to those that need them. A Federal coordination panel presented on the various opportunities throughout federal agencies that support projects related to PEPH.

Autism Speaks participated in the workshop by presenting information on a number of different partnerships and initiatives to link the autism community to research, including the Interactive Autism Network [1] funded by Autism Speaks and Autism Speaks' Global Autism Public Health Initiative. In addition, staff presented an analysis of the recent development of the Autism Speaks' blog [2] and the large Facebook [3] community that follows the blog, especially the science content written by Autism Speaks science staff and other researchers. Attendance at the meeting was an opportunity to share the activities of Autism Speaks with leaders in environmental public health and learn from experts engaged in projects that promote interaction between communities and academia.

Autism Speaks looks forward to continuing to engage our PEPH partners to take advantage of the many opportunities presented to deliver more effective information about environmental concerns, and encourages other groups to learn more about existing partnerships and opportunities on the PEPH website [4].