How Community Input Informed a Report on Potentially Harmful Chemicals

In July, the National Academies of Science, Engineering, and Medicine released a groundbreaking report about the testing and treatment of people who have been exposed to “forever chemicals” that go by the acronym “PFAS.”

PFAS, or perfluoroalkyl and polyfluoroalkyl substances, are chemicals used in many products, often to make items oil- and water-repellent or to lessen friction – think non-stick cookware or stain-resistant fabric. They’re called “forever chemicals” because many of them are very stable, and the PFAS that do transform result in chemical products that still contain PFAS.

A September report from the U.S. Government Accounting Office found PFAS in a significant percentage of water systems in Ohio and five other states.

PFAS exposure has been linked to an increased risk of kidney cancer, decreased infant and fetal growth, and other health problems. With this knowledge, how should health care professionals care for exposed patients? That’s the question the National Academies’ report wanted to address. Alex Kemper, MD, Chief of Primary Care Services at Nationwide Children’s Hospital, was one of the report’s committee members.

The National Academies did something that is rare in medical and scientific reports and research: they received initial guidance from patients and affected individuals themselves. Nationwide Children’s and other institutions have shown how important listening to stakeholders can be before beginning efforts to improve health. But it’s still unusual in the research world.

The Collaboratory talked with Elizabeth Boyle, MPH, Study Director at the National Academies, about how she brought public input into the study process.

The Collaboratory: Why did you decide to include public input as an initial step of the report?

Elizabeth Boyle: A National Academies report starts with putting together a committee of experts to examine the issue. We have strict guidelines on limiting conflicts of interest and on balancing biases in committee membership. When we posted a preliminary list of committee members for public comment, we were asked if we were going to have any committee members who lived in communities that had known PFAS contamination.

It was a good point. PFAS have been a concern for decades, and there are grass-roots organizations across the country that advocate on the issue. We could not find any community members who would meet our guidelines.

The Collaboratory: So what did you do?

Boyle: We thought it was important to include the perspectives of individuals with lived experiences in PFAS-exposed communities. So we came up with the idea of community liaisons. We put out a call for members on listservs, and it was covered by the media. We were very inclusive of anyone who wanted to be a community liaison, but we did limit it to one person per organization.

I met with the liaisons regularly as we were collecting data for the report. I asked them what issues were important to them and who else we should hear from. I used that information to help inform our public meeting agendas.

The Collaboratory: What did you learn from the liaisons?

Boyle: Every National Academies committee has a “statement of task.” One piece of this committee’s task was to develop general principles on patient testing and clinical follow-up given uncertainty in the science or data, like gaps in the evidence on PFAS. The committee’s scientists needed to develop a way to think about these issues and understand what mattered to patients. The liaisons’ perspectives were very important in shaping that thinking.

We heard over and over, for example, that family physicians knew very little about PFAS. We heard that if a doctor did not have a long history in a community that had been exposed, they may not understand PFAS as an issue.

You see in the report that information from our liaisons and town hall discussions are included throughout. The committee used a lot of what they were told to inform the report.

The Collaboratory: Do you think you’ll use this public input format in future reports?

Boyle: That’s a great question. I think having a group of grassroots advocates was incredibly important for this report. It helped our organization build trust with the communities, and it allowed the committee to hear perspectives from many different communities. There are some issues that won’t have grassroots advocates like the issue of PFAS does, and not all projects have a statement of task that allows a committee to consider perspectives from such a wide variety of stakeholders.

If the goal of another study is similar to that of the PFAS study, to suggest the ways that physicians should monitor and treat patients, then patient input seems crucial.