Prioritising Research through Engagement with older Adult Care Homes and potential for mapping to existing data sources: the PREACH study

Imagine a place where the daily rhythm of life is shaped not by the ticking of a clock, but by the needs of the people living there. For decades, scientific research has sought to improve the lives of older adults in care homes, yet a persistent gap has remained between what scientists study and what actually matters to the people inside those walls. Researchers often focus on medical outcomes, such as how a specific drug affects a disease, while the people living in these homes, their families, and the staff who care for them frequently worry about different things: the quality of their days, the presence of loneliness, and whether they have enough support to live with dignity. When research questions are set without listening to these voices, the resulting studies can feel disconnected from reality, leaving valuable resources spent on answers to questions no one is asking. To bridge this divide, scientists must first learn to listen, identifying the true priorities of the community before designing a single experiment.

This is the central mission of the PREACH study, a large-scale effort designed to find out what research matters most to the people living and working in UK care homes. The researchers did not start with a hypothesis or a specific medical condition in mind. Instead, they opened the floor to anyone with a connection to care homes, inviting residents, their relatives, staff, managers, and health professionals to share their ideas for future research. Over the course of eighteen months, the team engaged with 1,063 people across 50 different care homes. They used two main methods to gather these thoughts: an online survey for those who could type their ideas, and in-person group sessions for residents, facilitated by care home activity staff who helped them write their suggestions on cards. The goal was simple but profound: to collect a vast array of unfiltered ideas about what research should focus on, and then to see if existing data could already answer those questions.

The results of this massive conversation revealed a clear and consistent picture. When the researchers sorted through thousands of suggestions, they found that the most frequent priority across all groups was access to meaningful activities for residents. This topic appeared in 22 percent of all the ideas submitted. While the specific activities varied—ranging from exercise and social outings to creative arts and learning new skills—the underlying desire was the same: a life filled with engagement rather than just existence. Residents and their families spoke passionately about the need for social connection, the joy of getting outside, and the importance of having choices in their daily lives. They wanted research that would help them feel more like individuals and less like patients. In contrast, while staff members also valued these human elements, they frequently highlighted the practical pressures of their jobs, such as staffing levels, training, and the mental well-being of the workforce. Managers and owners often pointed to financial and operational challenges, while researchers tended to focus more on specific medical conditions like dementia or the use of technology. Despite these different perspectives, a common thread ran through the responses: a desire for research that improves the quality of everyday life, rather than just treating illness.

Having gathered these priorities, the team then undertook a second, equally important task: they tried to match these human-centered questions against a massive archive of existing data. They looked at the Virtual International Care Homes Trials Archive, a collection of data from roughly 6,000 residents who had participated in previous care home studies. The researchers asked a straightforward question: could the answers to the most important questions identified by the public be found in this existing pile of numbers? The answer was a resounding no. None of the top priorities identified by the stakeholders could be directly addressed using the data that was already available. The existing datasets were excellent at measuring clinical outcomes, such as whether a resident fell or how many medications they took, but they were largely silent on the things that mattered most to the residents: their sense of belonging, the quality of their social interactions, and their experience of daily activities.

This mismatch highlights a significant disconnect in the current landscape of care home research. The study suggests that while we have a wealth of data on the medical and physical aspects of care, we are missing the tools to measure the relational and experiential parts of life that residents value most. The researchers found that to truly answer the questions people are asking, new data must be collected specifically designed to capture these human experiences. It is not enough to simply look at what is easy to measure; the field must develop new ways to record and understand the nuances of daily life in care homes. The study concludes that collaboration with care home teams is a practical and effective way to reach large numbers of residents and generate relevant research agendas. By placing the voices of residents and their families at the forefront, the scientific community can move away from a cycle of studying what is convenient and toward a future where research truly reflects the needs of the people it is meant to serve.