Data Conversations: What Do We Really Mean by Data?

Led by: The SCONe project, University of Edinburgh

Funding awarded: £6,925

About the project

The SCONe project, whose staff are based largely at the University of Edinburgh, aims to improve health outcomes by establishing a comprehensive repository of retinal images from optometry practices across Scotland.

Supported by the RDS Public Engagement Fund, the project team created age-appropriate, participant-driven resources that raise public awareness of the value of retinal images as data in healthcare research.

The term ‘data’ covers a wide range of information, which can make it challenging for the public to engage in discussions about data research. Using the SCONe project as an example, the team worked with the public to break down complex ideas into tangible examples.

Working with participants, they explored the implications of using – or not using – health data in research around disease prevention, care and early detection.

Designing the project

The project consisted of three phases:

The first phase included a workshop at the University of Edinburgh to design cultural probes – packages containing creative, thought-provoking tasks that participants can complete at their own pace. These cultural packages focus on retinal images as data for health research.
In the second phase, the cultural probes were distributed to participants to encourage discussion and further development of the resources.
In the third phase, the project team held a workshop with all the participants, two public partners and two SCONe representatives to analyse insights from the cultural probes and develop the foundation of materials that enhance public awareness of the value of retinal images in healthcare research.

Project impact

The outputs from the project resulted in a set of participant-led recommendations for researchers on how to communicate and engage with the public about health data.

These recommendations were published in a findings report which summarised the activities, discussions, and insights from the project.

A public-facing video was identified by participants and the PPI group as an important additional output to communicate the value of the project, and this will be published in the coming months.

Breaking down age barriers

The project team aimed to include participants that reflect the range of demographics included in the SCONe repository, with a focus on young adults (18 to 25) and older adults (60+).

The team identified that there are often limited opportunities for participants from these generations to come together and engage in meaningful dialogue. Through the project, they focused on engaging with participants of a mix of ages, providing perspectives from people who haven’t grown up with technology and younger people with a digitally centred background.

The project team were successful in bridging the generational gap, engaging with nine 18 to 25 year olds and eight aged 60+ through the workshop.

“Knowing the project was developed with patients and public representatives from the beginning, not just consulted at the end, made the experience feel genuinely collaborative.”

Participant

“Data Conversations shows that meaningful engagement is possible, but only when researchers are willing to open the conversation to discomfort and disagreement, and recognise that meaningful engagement changes everyone involved, not just the public.”

Ana Rubio, PPIE Lead

“We cannot expect the public meet us only in our world of objectivity and abstraction. We also have to meet them in theirs—in the world of stories, feelings, fears, and hopes.”

SCONe team member