Our Community Outreach & Ethics Core works to ensure that collaborations between researchers and community groups are mutually beneficial and transparent. Photo © 2014 Clipart.com.
My recent leadership responsibility with the IFOPA has me thinking more directly about the role collaboration plays within our Center. Collaboration is a bit different in the Center for Ecogenetics and Environmental Health than for the rare disease community I described earlier. There are no pharmaceutical companies. There is no single disease population or organized patient group. Still, scientists engaged in basic research need participants for their studies. Basic scientists need clinicians to describe the disease phenotype. Researchers need informaticians to help ask the right questions. And findings need to be translated to the next phase of research to be included in policy and practice.
Let’s take one of those stakeholders: the general public. Why should they care about environmental health research?
- People get sick from environmental exposures. Anybody who has asthma, or whose children have asthma, has a stake in research about air pollution. People with a family history of cancer or heart disease have a stake in research related to those diseases.
- An emerging hazard may alarm the public, for example the meltdown of Japan’s Fukishima nuclear reactor in 2013. People on the west coast want to know if they are being exposed to radiation. Thankfully, tests indicate low radiation levels, but if results were otherwise, concerned citizens might ask to participate in research studies. In cases of industrial pollution or exposures from factories, citizens come to scientists asking for research.
- Potential participants might be interested in science, or simply be curious. Others are activists who like to be involved. Some sign up to get the monetary incentives.
Public engagement professionals like us in the COEC can help educate the public about the importance of research and the need for participants.
Once identified and recruited, researchers need to retain their participants. A few simple strategies can maintain participant interest. Hearing back about the study lets participants know their role is important and appreciated. Researchers can send results via newsletter updates or a summary of publications written for a general audience.
In January, the Center sponsored the first meeting of our new CEEH Breakfast Club, a monthly gathering of Center members for an informal presentation and discussion. The topic was crowdfunding for science. Dick Beyer spoke about participating in the American Gut Project to have his microbiome sequenced. Dick displayed a placemat-size printout with his name in large letters and pie charts of the relative abundance of his microbes and how he compared to others. Not only did he participate, he paid $100 for the privilege, although scientists don’t claim to understand how the composition of our microbiome affects our health.
Someone asked whether Dick would participate again. “Oh, yeah,” he responded. “I'm really glad American Gut is doing this. But I mainly wanted to learn something about me.” Getting his results, even results that aren't closely tied to health, was worth not only participating but paying for it.
It could be we need to think a bit more – and ask – about what we can get from and give back to participants. The answers might surprise us!
-- Marilyn Hair