Building knowledge on cardiovascular health and financial hardship: experiences of a citizen scientist
Background:
Cardiovascular disease (CVD) is the leading cause of death worldwide. Individuals with lower income or experiencing financial hardship face a significantly higher risk of developing CVD. However, there is a lack of in-depth insight into their experiences with CVD, and specific attention to women is essential. It is difficult to gain in-depth insight into experiences with financial hardship if you have not experienced this yourself. Moreover, people with financial hardship do not always trust institutions and professional scientists enough to participate in research and share their full story. Citizen science with people with this lived experience gives the opportunity to build knowledge on cardiovascular health among people experiencing financial hardship.
In the “In a Heartbeat” project, nine citizen scientists with lived experience and five professional scientists work together as equal partners. The presenter, a certified expert by experience, is also the first author of the peer-reviewed study protocol, marking a milestone in recognizing citizen science and experiential knowledge as equally valued sources of knowledge and possibilities for growth for the citizen scientists and professional scientists.
Objective:
The study aims to understand the relationship between CVD and financial hardship to enable earlier recognition and prevention among both women and men.
In our citizen science study, we unravel the mechanisms and contexts through which financial problems lead to the development and late recognition of CVD.
This contribution focuses on the communicative and relational dimensions: the role of citizen scientists—including as co-project leader and first author—and how trust, reciprocity, language choices, and shared ownership/authorship shape participation and confidence in science.
Methods:
The project builds on a long-term collaboration with 8 of the 9 citizen scientists (in a citizen advisory group in the Netherlands) where mutual trust grew, leading members to “climb the participation ladder” to become co-researchers.
Additionally, a certified expert by experience (the presenter of this abstract) became interested in doing citizen science in the area of women’s health and heart disease. A funding call for citizen science in cardiovascular health allowed us to work together with this team of nine citizen scientists and five professional scientists.
The main data are collected through qualitative lifeline interviews conducted in duos (citizen–professional), where shared lived experience helps with gaining trust and openness of interviewees.
Weekly meetings utilize methods like photo elicitation, design thinking, and a dynamic learning agenda. We deliberately invest in accessible language and regular evaluations that explicitly address issues of trust, power, recognition, and safety.
Results:
Data collection through qualitative lifeline interviews began in November 2025 and is expected to end by mid-2026. Consequently, some preliminary results about financial hardship and cardiovascular health will be shared during the symposium. Furthermore, by the time of the conference, we will have completed four rounds of individual and group evaluations with both the citizen scientists and professional scientists. Based on these evaluations, and enriched by the lived experiences and stories of the presenting author—a certified expert by experience—we will share insights into the citizen science process. We will focus on how trust, participation, and inclusive communication were fostered within this collaborative partnership, highlighting both successes and practical challenges.
Conclusions:
Toward the end of the study in 2027, the project will yield concrete recommendations for individuals experiencing financial hardship, health and social professionals, health promoters, and policymakers to improve the early recognition and prevention of CVD. In all our analyses and recommendations, we will consider sex and gender differences. Our study could eventually contribute to a reduction in health inequalities.
Simultaneously, the project offers deep insights into how participatory research can strengthen the bond between citizens and science, specifically when working with communities that often have low trust in institutional research.
We will share lessons on which communication strategies, support structures, and authorship practices—such as the milestone of a citizen scientist serving as first author—allow individuals in vulnerable situations to participate meaningfully and safely as knowledge producers in their own right. By presenting these experiences at the PCST Symposium, we aim to foster a dialogue on how inclusive science communication can build trust and equity with communities that usually remain unheard.
We intend to leave room for audience questions and discussion, enabling a collaborative learning experience during the session.