Special Session SS01 - interactive debate on patient interaction in transplantation and cell therapy
Sunday 14 March, 16:00-17:30, Auditorium 6
The first of EBMT’s Special Sessions takes place on Sunday afternoon, with the theme of patient engagement covered by four speakers.
In the first talk, Chris Lewis, the Chief Executive of his own charity Chris’s Cancer Community, will discuss the challenges faced by patients who want to engage in helping clinicians and science with the quest for quicker improvement in the blood cancer and stem-cell transplant area.
“In previous years there has been a resistance to patients being involved - now their importance is appreciated, and it is the best way to improve collaboration,” explains Chris. “There are many challenges to overcome from both sides but ultimately, we all want the same thing. I believe that without this way of working together we will never really make the progress we need, in a timely manner.”
He points to COVID-19 as an example of what powerful collaboration can achieve. “We now have several COVID-19 vaccines to hopefully keep people safe in the future – only one year after the disease was discovered. Just imagine what could be achieved if we worked the same way in cancer,” he says.
“Patients and carers have unique experience and knowledge, which used correctly could be the missing piece of the jigsaw. We must find a way of harnessing that as quickly as we can. With open minds and fast improving technology we can make up for lost time together!”
Another presentation in this session sees Dr Linda Burns discuss the practical considerations of integrating patients in research projects. Dr Burns is the Senior Scientific Director of the Center for International Blood & Marrow Transplant Research (CIBMTR), Milwaukee, WI, USA.
She explains: “Engaging patients at each step of the research path, from topic selection to evaluation of the impact of results on patient care, leads to useful, high-quality research that improves patient outcomes.”
In her talk, Dr Burns will review a multi-year project performed by the National Marrow Donor Program/Be The Match and Center for International Blood and Marrow Transplant Health Services Research Program that engaged stakeholders representing patients, caregivers, clinicians, researchers, program directors and policy makers in working groups focused on identifying priority research questions in six topics of importance to patients. She explains: “Patients and caregivers provided unique perspectives about research priorities and were valuable partners in telling others about research and explaining the meaning of results.”
The last presentation in this session is by Dr Sarah Liptrott of the European Institute of Oncology (IRCCS), Milan, Italy. Her talk will cover Patient Reported Outcome Measures (PROMs), which are tools or instruments that can be used to measure patient reported outcomes. These are reports coming directly from patients that can provide information about functional status, health related quality of life, symptom experience and the burden of symptoms, and experience of care. There are many different types of PROMs – some generic and others specific to disease or treatment processes.
Dr Liptrott says: “This session will look at the use of PROMs in clinical practice. I will be asking whether patients have been asked to complete PROMs and in what context – whether as part of a clinical trial or as part of a routine hospital visit. While completion of PROMs can be time consuming it can give a valuable insight into the experience of the individual. I will also be asking what benefits patients may expect from having taken the time to complete the PROM in terms of long- and short-term gains.”
Also in this session, Prof Sabina De Geest of the University of Basel Switzerland and KU Leuven, Belgium, will give a talk entitled “why consider patient engagement in research.”