Outcomes-based research, big data and narratives: interview with Xosé Fernández

We are pleased to propose an interview with Xosé Fernández, Chief Data Officer at Institut Curie (Paris), with experience in both academia and working in and alongside several pharmaceutical and biotech companies. For a broader presentation of his work at Institut Curie, we suggest to also refer to these interviews on employing big data in research against cancer

Q. What is outcomes-based research, and how does it influence the quality of care?

XF. Outcomes research is the approach in biomedical research that goes beyond traditional measures, such as mortality and morbidity, to explore other aspects, such as quality of care or access to treatment, in order to assess clinical practice paying special attention to patient-centred data. This means we have a more human approach and therefore a more personalised care.

Q. How can Narrative Medicine interact with outcomes-based research, in your opinion?

XF. Medicine has never been exempt from narrative concerns, it is a human enterprise where a human being helps another human being. Medical practice requires the engagement of one person with another. Outcomes-based research has been advocated as the mechanism that will deliver a more human healthcare, where medical practitioners acknowledge, absorb, interpret and act on their patients stories.

Q. What do big data mean in the healthcare field, and how could they influence care?

XF. Thanks to big data we have a better understanding of what’s going on with our patients. We can look back into time and assess treatment progress, we can see the impact of new treatments in patient survival and disease progression. This is a core ethical principle of medicine since Hippocrates, the imperative to learn from current patients, we treat our current patients based on the lessons learnt from previous patients.

Q. How does the Curie Institute, a centre of excellence in cancer care, work on patients’ life-time data, and with which purposes and expectations?

XF. Institut Curie assembles a hospital group devoted to cancer research in the Paris region with a research centre focused on basic research with around 3500 collaborators. Having the possibility to integrate research data with clinical data allows us to zoom into cancer. Our hospital group is specialised in cancer, we are not a general hospital.  Therefore we don’t have the whole clinical history of our patients (to make things more complicated, France cancer is fully reimbursed and patients have the choice of hospital so in a centre of excellence such as Curie, we treat patients from all over France and not only the Paris region). However, France has a unique database for the whole country tracking reimbursement claims, this database can be mined in research projects and we can attempt to reconstruct the patient journey before cancer and after Curie. Such approach allows us to find out possible correlations between some treatments and future cancers (there have been some drugs removed from French pharmacies thanks to this evidence), as well as the effect of co-medication in cancer treatment (chemotherapy dosage can be reduced with the same effect).

Q. How can Narrative Medicine deal with big data, in particular for cancer patients, in your opinion?

XF. Electronic medical records provide a great source of information where we can trace the progression of the disease from early signs. We can follow the different hypothesis practitioners considered during the patient journey, it can include verbatim comments from the patient about their situation alongside the physicians’ interpretation. It is not about gathering information (although we are fortunate enough to have nearly 20 years of exhaustive follow up of some patients in our EHR system), we want to accelerate the journey from data to knowledge. Moreover, our patients have access to the medical notes of their consultation through an app, myCurie that allows them to carry an electronic notebook (carnet in French) in their mobile phone to be in possession of all that information.

Q. This last question addresses your interest in metaphors employed to describe cancer: do you have an opinion on using metaphors of war, fight, survival, and therapeutic weapons?

XF. I think the best metaphor to describe cancer is the journey (or voyage), today most cancers become chronic ailments and patients live with the disease for many years. I do not like warlike metaphors as they carry a negative stigma, which points as failures those who did not survive the disease as if they did not want to live.

Maria Giulia Marini

Epidemiologist and counselor in transactional analysis, thirty years of professional life in health care. I have a classic humanistic background, including the knowledge of Ancient Greek and Latin, which opened me to study languages and arts, becoming an Art Coach. I followed afterward scientific academic studies, in clinical pharmacology with an academic specialization in Epidemiology (University of Milan and Pavia). Past international experiences at the Harvard Medical School and in a pharma company at Mainz in Germany. Currently Director of Innovation in the Health Care Area of Fondazione ISTUD a center for educational and social and health care research. I'm serving as president of EUNAMES- European Narrative Medicine Society, on the board of Italian Society of Narrative Medicine, a tenured professor of Narrative Medicine at La Sapienza, Roma, and teaching narrative medicine in other universities and institutions at a national and international level. In 2016 I was a referee for the World Health Organization- Europen for “Narrative Method of Research in Public Health.” Writer of the books; “Narrative medicine: Bridging the gap between Evidence-Based care and Medical Humanities,” and "Languages of care in Narrative Medicine" edited with Springer, and since 2021 main editor for Springer of the new series "New Paradigms in Health Care."

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