Univeristy of Bristol Lead: Dr Lucy Selman (Population Health Sciences, Bristol Medical School) is experienced in delivering events to engage diverse stakeholders, she is the founding director of the Good Grief Festival, which has engaged over 26,000 people since 2020. In May 2022 Selman invited the KidneyPal team to present at a joint event organised by the Palliative and End of Life Care Research Group (lead: Selman) and the Bristol Renal Research Group (lead: Caskey); 65 people attended, including palliative care and renal clinicians as well as academic researchers from across the UK. The proposed event builds on the success of this webinar and the enthusiasm it generated to collaborate.
Institutional Partner Lead: Professor James Tulsky (Harvard University / Dana Farber Cancer Institute) is a world-leading clinical academic (H-index 88), he has a longstanding interest in doctor-patient communication and quality of life at the end of life, and has published widely in these areas.
Other participants:
Dr Josh Lakin, Senior Physician, Dana-Farber Cancer Institute and Medical Director of the KidneyPal Program
Katie Sciacca, KidneyPal Nurse Director and Director of Palliative Care Nursing, Brigham's Women Hospital
Fergus Caskey, Professor of Renal Medicine, University of Bristol and North Bristol Trust
Yoav Ben-Schlomo, Professor of Clinical Epidemiology, University of Bristol
Dr Barney Hole, doctoral research fellow and trainee, kidney specialist, University of Bristol
Dr Chloe Shaw, Senior Applied Conversation, University of Bristol
Dr Ryann Snowden, Early Career Researcher and Research Support Assistant, University of Bristol
Increasing numbers of older patients receive dialysis each year in the UK and US, even though for the oldest patients and those with comorbidities and frailty, dialysis confers little survival benefit and carries substantial burdens. For these patients, conservative management, which emphasises quality of life following a palliative care approach, can be a beneficial alternative. Understanding how people decide between available treatments and ensuring they receive patient-centred care is a hot – and unsolved – topic. Dialysis is expensive and neither the UK nor the US healthcare systems have an adequate funding stream for palliative care. New research is needed to inform treatment.
In recent years UoB has developed specific expertise in research at the renal and palliative care interface, in particular around supporting patient-centred decision making for older people deciding whether to have dialysis, with Caskey (PREPARE), Hole (UNPACK) and Selman (OSCAR) receiving substantial NIHR grant income to develop cutting-edge research in this field. Tulsky is a world-leader in communication research, with his clinical collaborators in Boston offering a novel integrated model of care for advanced renal disease patients, the KidneyPal service. This project unites our major interests and complementary expertise.
Activity:
The aims of this collaborative one-day workshop are to share research and clinical practice models related to treatment decision-making in advanced kidney disease and to generate ideas for future collaboration.
During the event we will consider: research methodologies, sharing our expertise in e.g. Conversation Analysis (UoB) and data science (Harvard); research questions and settings for viable collaborative research; and targets for high-quality external funding bids. Based on our discussions we will also initiate a journal paper outlining unanswered research questions and directions for future research. The event will also serve to consolidate the partnership between the institutions (building on visits conducted by Selman during her NIHR Fellowship).
