Involving the community in research to improve preparedness for the next pandemic

Research studies that aim to improve preparedness have to be set up and running before the start of a pandemic. When the COVID-19 pandemic started, some of our earliest insights into how SARS-CoV-2 was affecting Switzerland came from existing research studies that were adapted quickly. By contacting former participants of a study about diabetes,[5] investigators in Geneva created a new study that showed that by May 2020, most of the Swiss population was still susceptible to COVID-19.[6] That study has continued to provide knowledge about COVID-19,[7][8] but it was not set up to study infectious diseases. In the United Kingdom, researchers who studied patterns of social contact before SARS-CoV-2 arrived[9][10] could rapidly help to understand which interventions could prevent SARS-CoV-2 transmission.[11][12] Those studies did not, however, collect samples that could be tested for infection.

Our team at the Multidisciplinary Center for Infectious Diseases, University of Bern is setting up a participatory cohort study called BEready (“Bern, get ready”), which means involving community members at all phases of the research and following a defined group of households in the Canton of Bern over time. The BEready study will address gaps in research about pandemic preparedness in three ways: a) raising awareness in civil society about the importance of preparedness for future pandemics, b) collection of essential data, including samples, to characterise the Bernese population, their knowledge and views about infectious diseases, and c) when the next pandemic pathogen spreads to Switzerland, BEready participants will be ready to take part in research projects that will improve our understanding of the new disease and contribute to implementation of preventive measures.

New cohort studies like BEready, which investigate infectious diseases, can incorporate plans for deployment of specific studies in future pandemics.[13][14] Experts in pandemic preparedness strongly recommend the establishment of such cohorts[15], which can foster active ongoing communication to promote public engagement in infectious diseases research and provide a platform that can pivot rapidly to launch essential studies to gain early understanding about newly emerging infectious diseases. The timing of emergence and the route of transmission of pandemic-causing pathogens is not known so BEready will collect different types of information from participants. We will also collect samples, for example swabs like those for COVID-19 tests and conduct laboratory analyses. Over time, we will be able to examine trends in exposure to specific infections and factors associated with them.

We plan to enrol a random sample of around 1,500 households across the Canton of Bern, including adults, children and household pets during 2023-24. Community members will co develop meaningful and relevant research questions, promote the cohort study in their personal networks and relevant communities, and contribute to the enrollmentenrolment of households, collection of data, and to making sense of the findings. We will jointly develop recommendations for action. Community engagement will range from peer-researchers, staff, advisory and consultation boards to community champions and promoters. Regular public outreach events will be set up to inform households about activities of BEready, findings from the research and recommendations for actions to be taken at community and policy level. 

We are still preparing the BEready cohort. The key to the success of sustainable participation is early engagement with the public, politicians and other stakeholders. Involving these actors, building a BEready community and maximising visibility, will be key to the success of our project.

We want the people in the Canton of Bern to claim BEready as their cohort, wanting to ask relevant and meaningful questions, to succeed, feel proud of being part of it, lobby for it in a bottom-up/grassroots manner, and actively help to shape it. Partners in civil society can help galvanise other community members, so we will involve people from the canton as peer researchers as well as cohort promoters in their networks and communities. Public involvement and engagement will result in better (i.e., more relevant) data and a population more aware of the importance of and actively seeking preparedness. If politicians, media and the general population feel ownership of BEready, they will actively contribute to its success and also ensure that cohort members remain in the cohort.

In addition to the public, who will be central for our idea, the following actors are needed.

Government and parliament can amplify our message and support policies that will promote a favourable environment for such a pandemic preparedness cohort. Broad buy-in from politicians will help us to get the population involved. A close collaboration with policy makers could foster joint projects to answering policy-relevant questions around pandemic preparedness.

The media are essential in getting the word out there. Their messaging will shape people’s opinion. They can contribute to an ongoing open discussion of people’s expectations and concerns surrounding the cohort and promote continued improvements.

The value of the cohort will be greatest when a new pandemic starts to emerge. In-between pandemics it may be more difficult to convince donors and public funding bodies of the importance of maintaining the cohort’s infrastructure as priorities may shift to other research areas. Hence the support of foundations and businesses who commit to altruistic long-term funding will ensure the cohort can be maintained.

Academic partners will be able to propose their own research questions and apply for data access and additional data collection. Collaborative research will ensure that the BEready cohort answers relevant scientific questions about pandemic preparedness from across all scientific disciplines.

When the next pandemic arrives, the BEready cohort and community will be prepared and will take part in studies that provide essential information to prevent a crisis.