Charlotte Hedin, a specialist in gastroenterology and internal medicine at Karolinska University Hospital and an active member of Work Package 4 (IBD), recently profiled Marc Ferrante for the European Crohn’s and Colitis Organization’s Y-ECCO Interview Corner. Marc Ferrante is a professor at KU Leuven and specialist in gastroenterology and hepatology at UZ Leuven and co-lead of Work Package 4.
The interview covers the backstory of how Marc became involved with IBD research and activism, his inspirations and philosophy, current projects, and future goals. As part of the interview Marc highlights the H2O project and its potentially transformative benefits for the IBD community, including patients and clinicians.
Although Marc’s initial plan when starting out in medicine focused on Africa and Médecins Sans Frontières, life intervened and he became passionate about IBD after pursuing a PhD in the field on the advice of his mentors. His experiences with work and travel in Africa, post-doctoral research into the potential of organoids in IBD at a basic science lab, and his love of clinical work with patients all influence his approach now as a physician, researcher, professor, and activist in the field. Marc’s focus now is on improving quality of care using health data, including patient-reported outcomes. He is working on this at the national level in Belgium and at the European level. As he points out,
“What we want to achieve is to put the patient more in the middle of what we are doing. Not to only look at the classical outcomes we have for clinical trials but to focus on patient-reported outcomes (PROs). We are already implementing some PROs in clinical trials such as the PRO-2 in Crohn’s Disease and Ulcerative Colitis, but there are likely many more outcome factors that we could ask our patients about and that may in the future become more important in deciding whether a product is valuable as a treatment. We strive for endoscopic remission and nowadays even for histological remission, but maybe we should strive for a patient who has an improvement in their PROs as well.”
The effort to standardise and expand PRO collection is a core component of the H2O project. Furthermore, he stresses the importance of integrating health data like this into existing electronic medical records systems to inform clinical care and drive improvements in quality. The H2O observatory model will take this a step further by making health data, standardised across multiple European countries, available to stakeholders for research purposes so that aggregated outcomes can benefit not only larger patient populations, but health systems and health care overall.
Of course, Marc also sees the benefit of outcomes collection and data visualisation as a clinician.
“I would like to have a system where, before the patient enters the office, I already know in which direction the patient wants the consultation to go…If the patient has highlighted problems with for example fatigue, I can then ask directly about fatigue. Often the patient will bring up the problem at the end of the consultation, so it is a great advantage if you as the physician or nurse can bring it up directly and say ok, let’s talk about fatigue because I see based on your answer that it is quite important for you. I think in this way projects like H2O can help to individualise the patient contact and facilitate patient empowerment.”
The patient side of this equation must be at least equally considered and is key to the sustainability of the H2O project and model. Without wide acceptance by patients, which can only happen if the project’s offerings are actually valuable for them, there can never be outcomes collection at a large scale. Marc addresses the central role of patients in the project,
“They are in the front line; their ideas will be regarded as the most important ones. We will use the classic Delphi process to come up with the list of factors that we want to use, and patients are in the core panel and also in the focus groups and their opinions will be prioritised in generating the list of outcomes. Patients also need to be involved in defining what the value is for the patient in filling out these questionnaires: patients will do it once or twice in the clinic, but if they don’t clearly see an added value, they will stop doing it and that, of course, is not what we want – we want them to be consistently and repeatedly filling out these questionnaires. For us as physicians and scientists the benefit is that we can do science, set up trials or find out about these diseases, but the benefit to the patient has to be clear, too.”
The strength of H2O lies in its multidisciplinary, public-private consortium, and especially in the individual people who are working on the project. Follow H2O for more updates on the work done by Marc, Charlotte, and all of WP4!