Multiple Long-Term Health Conditions: Patient Perspectives
On 28th March 2023, twelve patient and public representatives were invited to LIDA for the Multiple Long-Term Conditions inaugural workshop hosted by the Survivorship and Multimorbidity Epidemiology research team.
Led by Dr Charlotte Sturley, the purpose of the workshop was to better understand the experiences and challenges of people (and carers of those) with multiple chronic health conditions and address the current lack of patient advocacy in this area.
The workshop began with presentations from Dr Marlous Hall, who leads the research team, and Dr Jonny Batty, Cardiovascular Registrar and Clinical Research Fellow providing insights into the ongoing multimorbidity research carried out by the team, its relevance and importance in the context of cardiovascular disease and the need for further research aimed at improving the quality of care and outcomes for individuals with multiple health conditions. These presentations were ‘live scribed’ by a professional illustrator to produce an immediate visualisation outlining the research teams work in lay terms.
The second half of the workshop was a facilitated session in which attendees were encouraged to discuss their experiences of living with multiple health conditions in a creative way. The discussions were again captured in a live illustration that was projected onto a screen in the room updated and consolidated throughout the discussions. A final infographic was produced detailing the participant’s health “journey” and what future research they would like to see in this area – which was available for printing and online immediately for researchers and participants to access. The infographic provides an invaluable asset to the team to be used in grant applications and at public engagement events to advocate for further research, as well as a direct output for the participants themselves to share and talk about their own experiences.
We received lots of positive feedback from attendees of the workshop, they particularly valued the opportunity to meet face-to-face and to contribute to a tangible output that will be used to advocate for further research and one they can use to advocate for increased awareness of the challenges faced by individuals with multiple long term health conditions.
Having had lots of interest in the workshop, we now have over 40 patient-public representatives keen to engage with the research team. We intend to hold a follow-up online event in the next 6 months for those who live further from Leeds, and three of the PPIE group will also be attending the LIDA Health Community Welcome event at the University next week.
This first workshop has given the team lots of ideas for future projects – so watch this space!
*We would like to thank all the patient and carer representatives for their time in attending the workshop and for sharing their experiences, as well as the other PPIE groups for their support in advertising the event. The workshop was supported by funding from the University of Leeds Research Development Fund and Wellcome Trust.
