Dr Lisa Ballard gave an oral presentation at the European Health Psychology Society

Title: Using focus group discussions to explore the use of routinely collected health data: lessons learned.

Background: The NHS aspires to the highest standards of excellence regarding the quality of healthcare. However, improvements often stall when viewed as research, separating them from healthcare. Ways to inhabit the hybrid space between healthcare and research, for example, technological developments in healthcare data collection, generate concerns about privacy, consent and data protection. Whilst such concerns are understandable, too much emphasis on these values comes at the cost of healthcare progress. Health psychology researchers can shine a light on this important area. 

Aim: Explore stakeholder views regarding their health data being routinely available for research and learning purposes.

Methods: A rapid qualitative research design was used to conduct online focus group discussions (FGD). Twenty-nine participants (21 women) between 19-77 years-of-age (mean 33 years-of-age) took part in six FGDs; transcripts were analysed thematically.

What went wrong: Despite our team’s experience, deliberating extensively regarding the content of the topic guide and several iterations after each FGD, the data were unable to meet our research aim. Participants often had strong, polarised views regarding privacy and security that prevented nuanced discussion and data saturation was quickly reached.

Possible solutions/conclusions: Focus groups are not an effective method to explore complicated topics with which participants may have limited previous experience. Therefore, we have developed an innovative new approach, which includes: non-digital methods to engage with a broader sample; public consultation; space for science communication and for participants to form opinions; as well as creative methods of collecting views and opinions i.e. story/comic strip completion.