How Four New York Funders Helped Engage the Public in Vaccine Rollout Decisions

BaLL LunLa/SHUTTERSTOCK

The development of COVID-19 vaccines has been a hugely important step forward in the country’s return to a semblance of normal life and business activity. Yes, the medical research around the vaccines continues as public health leaders assess concerns such as the shots’ effectiveness against emerging COVID-19 variants, and to understand the rare but potentially dangerous side effects that appear to be associated with a couple of the vaccines.

But given the limited number of vaccine shots available at any one time, public health policymakers in states and communities have also been dealing with the difficult and important questions of distribution and equity. In simple terms, they must develop a fair and effective policy to determine eligibility for vaccine doses. But who is best qualified to determine what’s fair? While this has traditionally been the job of doctors, policy wonks and elected officials, in recent years, there’s been a growing recognition that the actual people affected by policy ought to have a voice in the creation of those policies.

“We’re looking at vaccine access almost as a form of social change,” said Brian Byrd, senior program officer at the New York State Health Foundation. “To build sustained public trust, you have to have community buy-in, and to do that, you have to have the community’s voice in the process.”

This winter in New York City, four health funders collaborated to help develop equitable COVID-19 vaccine rollout policies using a community-input technique called “public deliberation.” The funders—the Altman Foundation, de Beaumont Foundation, NYS Health Foundation and United Hospital Fund—supported the public deliberation project carried out by the New York Academy of Medicine (NYAM) and the New York City Health Department.

In this case, the process amounted to a series of public events in New York City, conducted in English and Spanish, that provided information about the science of COVID-19 vaccines. Bioethicists discussed issues like fairness and equity in the vaccine rollout. And then the attendees broke into smaller groups to discuss their notions of such ideas as “essential workers.”

Too often, important policy is driven by powerful institutions and individuals without the input of the constituents, explained Dr. Marthe Gold, senior scholar-in-residence at NYAM, and one of the project leads. “The whole notion of public deliberation is to get an informed set of values and perspective of the people who are going to be affected by a public health decision,” she said.

The impetus to more fully engage the public has also been influencing clinical health research for several years. Rather than metaphorically descending from the ivory towers on campus to study the effects of new drugs or other interventions on “subjects,” scientists now engage early in the process with the communities in focus, who then act as participants to help shape research studies. The public deliberation process, said Gold, is even more layered than the approach typically practiced in research. In fact, the U.S. is sort of late to the game in public deliberation programs: They’ve been in more widespread use in places like Canada, Australia and the U.K.

Byrd said the New York State Health Foundation had long been focused on vaccine issues, following events like the measles outbreak in the state. But like many funders, last year, they pivoted to COVID-19. “Dealing with COVID was an immediate reason for the public deliberation project, but it laid the groundwork for future pandemics,” he said.

Following the public deliberation sessions, the New York City organizations involved in the process created resources available for use by other cities and communities throughout the country to gather community input on health policy and equity recommendations from community members.

Of course, the topic of vaccines in the U.S. and elsewhere is a cultural football, given the surprising number of people who, for various reasons, refuse to vaccinate themselves or their children, creating dangerous public health risks. Programs like public deliberation that seek to explain the science and facts about vaccines, as well as understanding concerns and fears—real or not—could be valuable measures in any number of health policy areas.

“This whole situation with the pandemic is unprecedented in the way that the virus took hold globally and the way the development of the vaccines was done in such a fast manner, that it created a difficult situation, where there was a lack of information, and misinformation, sometimes inadvertent and sometimes on purpose,” said Byrd.

“In many ways, the difficulties we faced with the COVID vaccines were probably unnecessary, and hopefully, we will be in a better position in the future, not just with pandemics, but with vaccine fears in general.”