‘Inspiring Stories’ with Lisa Ballard
Post-Doctoral Research Fellow and Wellcome Trust Fellow
This is part of the Engaged Medicine ‘Inspiring Stories’ blog series. The blogs explore the stories behind outreach and patient-public engagement activities of staff and students from the University of Southampton’s Faculty of Medicine.
What has driven you to participate in public engagement or patient involvement and how did you get started?
I spent eight years as a community behaviour change specialist in Southampton assigned to the then ‘priority neighbourhoods’ with the aim of reducing health inequality. Working with people living in the most deprived parts of our city and seeing the importance of involving them in the design and delivery of interventions and outreach work has left me with a drive to do the same in my position as a researcher. As a behaviour change specialist, I was lucky enough to meet 30-40 members of the public every week in groups sessions and one-to-ones where they lived and worked. Having so much involvement with the people the intervention was designed for meant that they were truly at the heart of what we delivered. I really miss this as a researcher and feel that engaging with the public and patients through PPI/PPE is a way to keep a similar mindset.
What do you do to engage and outreach with the public or patients?
My work regarding public and patient outreach and engagement includes:
100,000 Genomes Project – research partners
A small group of 100,000 Genomes Project participants were brought together to form a group of ‘Research Partners’. This group have been integral to the development and conduct of my work for my Health Education England Fellowship. The Research Partners have advised on everything from information sheets to data analysis. Most recently, they have helped develop grant applications for the next stage of this research. This group have also advised on colleagues’ research activities, proving invaluable for the research group. The group has enabled me to keep patients at the heart of the research I am conducting and ensure that it is relevant.
Biomedical Research Centre Project – exploring stakeholder views of trusted and transparent learning healthcare systems
Along with colleagues from my research group (CELS), we have developed a project to explore patient and public views about the use of routinely collected hospital data in research. We initially collected data via focus groups during the summer of 2020 but found that we were not generating the data we needed or recruiting a diverse sample of participants. We have since devised a methodology to tackle both the type of data we generate and improve the diversity of our sample, making sure we represent the views of often overlooked groups. This methodology includes:
- Science communication via illustrations and animations
- Non-digital methods of engagement and data collection via packs sent to people’s homes
- Creative forms of data collection, such as story or comic strip completion
- Evaluation of the study design and the inclusivity of the method
Science & Engineering Open Day – Delivering public engagement activities in genomic medicine in 2017, 2018 and 2019.
To communicate our research in an engaging way, our group have developed a game based on ethical and social research on familial communication. It has been a challenge in the past for CELS to engage the public in our research beyond encouraging discussion about ethical issues in medicine. However, this game has enhanced our outreach activities and is a vehicle to open up discussions with the public regarding the complexities of genomic medicine and research.
What reaction do you get and what do you feel is the impact of the engagement events, what happens as a result?
I cannot remember a time I have had anything other than a positive reaction! Engagement events get everyone thinking. I cannot really speak for the patients and members of the public, but they appear to find out something they did not know or think about something in a different way. For me as a researcher, it gives me a boost of energy to make positive changes to what ever it is I am focusing on at the time. It either confirms I am on the right track or gives me information on how to rethink my approach.
Why do you consider Public Engagement / Patient Involvement to be important?
It is important to acknowledge that you as a researcher, and as a research group or department, have certain views, ways you see the world and topics you think are important, but these might not be the views and priorities shared by the members of the group of patients your research focuses on. PPI/PPE allows you to test your views and priorities whilst also exploring the views and priorities of those you are conducting research with. Personally, I am working hard to go further with my current PPI/PPE work, and explore ways to engage with and garner the views of often overlooked groups.
Stay Connected! To find out more about the ‘Inspiring Stories’ series, Faculty of Medicine educational programmes and research, or to get involved use the links below or contact Dr Lucy Green.
University staff or students click here for the Engaged Medicine SharePoint