Whether your group is new or has been organized for years, one of the most pressing questions you’ll face is about health problems in your community. Typically, if you raise enough public attention and pressure, the state will ask the Agency for Toxic Substances and Disease Registry (ATSDR) to do a health study. While you may initially be excited, be careful what you ask for. ATSDR has a poor track record at investigating health problems in communities. You are more likely to get a result that is “inconclusive by design” than you are to get an honest answer to your questions. At least that’s what history tells us.
You can expect at least two things from ATSDR: First, the agency is going to treat your community like every other community that they have gone into. Second, ATSDR is going to use the standard methods they use to evaluate and investigate the health problems in your community. Unfortunately, these scientific methods cannot answer with any accuracy or assurance the questions that people have about health problems in their community. The best state-of-the-art scientific methods that ATSDR will use cannot determine what’s causing an increase in cancer, birth defects or any other adverse effect in a population of people.
In 99 out of 100 instances, health studies conducted by ATSDR or other government agencies are inconclusive or at best incapable of determining what might be causing an observed increase in a disease found in a community. Given this likely outcome, it’s critical to have a plan for how to get the most from a health study done in your community.
One important step is to define as a community what you want. Do you want a typical epidemiological study where a questionnaire is distributed throughout the community asking about health problems and the results are then compared to a matched unexposed community? Do you want a clinic set up in the community where people could be tested to evaluate their health? Maybe some portion of the community wants to be relocated or evacuated and you want ATSDR to recommend such action.
Once you’re clear on what you want, then you need to figure out how to achieve these goals. This will take some strategic planning and a strong organized community effort. Ask these three questions about the health study, the answers to which will give you a good sense of the intent of the investigators and the limits of the study:
- What are the goals of the investigation?
- How will the investigators get the information they need?
- How are they going to release the results?
Based on what you find out, you may decide that you don’t want to participate in this study. Or you may decide you want to change the agency’s plan to something that will be useful to your group. Changing their plan will require a strong organized community effort and a plan to get your points across to the agency. CHEJ can help you develop a plan to address a health study. Contact us at firstname.lastname@example.org
Also, tune in tomorrow at 12 noon EST to participate in a training session on Health Studies: What can they tell you about health problems in your community?