Part of the aims and objectives of the PULSE study was to co-produce the intervention with people affected by PoTS and other relevant stakeholders. To do this, we held a series of workshops with people who have been diagnosed with PoTS, friends and family members, physiotherapists, nurses, and academics. We used a series of co-creation* activities to explore and understand from a variety of viewpoints what kind of lifestyle and exercise intervention might be useful and manageable for people with PoTS. We also wanted to explore how best to go about making sure that the intervention works, and when testing such an intervention how to make such a trial as feasible as possible for people with PoTS to get involved – for example, making sure we are asking the right questions, and that taking part in testing elements (e.g. physiological testing, completing questionnaires, taking part in interviews) is not too onerous.
*What is co-creation?
Cocreation is “any act of collective creativity…”1 essentially, bringing together a variety of people to collaborate together to co-produce new healthcare interventions, with patients being included as experts in their conditions and life challenges2 equally alongside other stakeholders such as health and care professionals.
Co-creators
Rebecca Evans, Clinical Exercise Physiologist, UHCW NHS Trust
Emma Timms, Cardiac Specialist Nurse and POTS Patient, Oxford University Hospital
Dr Harbinder Kaur Sandhu, Associate Professor in Health Psychology, University of Warwick
Helen Eftekhari, British Heart Foundation Nurse Fellow / Syncope Advanced Nurse Practitioner, University of Warwick / UHCW NHS Trust
Associate Professor Dr Jane Simmonds, Co-applicant, University College London
Laura Baker, Patient
Melloney Ferrar, Syncope and POTS Nurse Specialist, Sheffield Teaching Hospitals Foundation Trust
Nigel Harris, Senior Physical Activity Specialist, Imperial College Healthcare NHS Trust
Shivam Joshi, Trial Manager, UHCW NHS Trust
Trudie C A Lobban MBE FRCP Edin, Founder & CEO STARS (Syncope Trust And Reflex Anoxic Seizures) / Arrhythmia Alliance
Rachael Harris, Patient Services Coordinator, STARS
Shane Keogh, Senior Physiotherapist, UHCW NHS Trust
Richard Powell, Clinical Exercise Physiologist, UHCW NHS Trust
Joanne Bullingham, Charity Administrator PoTS UK
Hayley Louise Kelly, Participant with PoTS
STARS representative (anonymous)
1Sanders, E.,B-N. & Stappers, P.J. (2008) Co-creation and the new landscapes of design, CoDesign, 4:1, 5-18, DOI: 10.1080/15710880701875068
2Ku, B. & Lupton, E. (2020) Health Design Thinking. New York: Cooper Hewitt