Based in a large Paris hospital, breast cancer specialist Joseph Gligorov feels privileged to be able to offer his patients a very high standard of care. He talks to Anna Rouillard about his efforts to help those working in more challenging settings do the same.
Joseph Gligorov is not alone in having been drawn to practice oncology by the unique quality of the patient–doctor relationship and the highly collaborative nature of the work.
Few others, however, can match his career-long commitment to improving and extending both. From his involvement in national and international guidelines conferences, to his role promoting cooperation among oncologists in the Mediterranean area, and his local initiatives training patients to use their own experience and insight to support other patients, Gligorov is a doctor who is constantly looking for ways to communicate and collaborate to improve the quality of cancer care.
It was on embarking upon an internship in medical oncology at Rouen, followed by his senior position in oncology at Tenon hospital, and Pierre & Marie Curie University in Paris, that Gligorov discovered the special demands of interacting with patients. “Cancer is a disease where patients need to discuss a lot of things,” he says. “The disease itself is clearly the central focus, but because of the stress and anxiety it provokes, and the uncertainty about the future, patients often open up to their doctors and share a lot. So not only do you have to know a lot about medicine, there is also a psychological aspect.”
The psychological aspect of care is something Gligorov believes is an integral part of quality cancer care, and he dedicates time each week to training the next generation of medical oncologists to communicate effectively with their patients.
“The interaction we have with patients is a kind of coaching. It is not just about offering information on the disease, it is about effective engagement that positively influences the patient’s acceptance of their treatment and their compliance with it. Training covers how to deliver what can sometimes be difficult information, such as the patient’s prognosis or certain side effects or safety issues of treatment.”
He adds, though, that doctors can only go so far in educating and supporting patients. “Of course I do my best, but at the end of the day, if I have not experienced a particular treatment myself, I can only explain what other patients have shared with me. I cannot know first-hand what it feels like to wake up and have lost my hair, or for my children to look at me in a certain way because I look different”. For this reason, he is rolling out a programme at the Tenon hospital in which cancer survivors are trained to coach current patients.
Learning from AIDS advocates
This is the first programme of its kind in oncology, but it was inspired by successful initiatives in another disease. “At the beginning of the AIDS epidemic, HIV was considered the new cancer, with people using the same terrible words that were associated with cancer: no treatment, suffering, death.” But at that moment, Gligorov says, HIV patients organised themselves and worked together to raise awareness about the disease and about the importance of involving patients in fighting it. As a result, they became involved in the process of drug development, treatment strategies, and clinical trials.
“We want to draw on this experience for oncology,” Gligorov enthuses. “Part of the reason that recruitment to clinical trials in cancer is so low, at around 10–20%, is that patients are often afraid. But if they can speak directly to somebody who has been through a clinical trial, who can reassure them and give them a positive picture, we may be able to improve these numbers.”
Through the programme, which will be rolled out in 2016/17 at Pierre & Marie Curie University, cancer survivors will receive training from nurses, doctors and patients, as well as psychologists, to equip them to lend support to people currently undergoing treatment. “What the patient needs in this kind of disease is to be able to look to the future and envisage a life after treatment,” says Gligorov. “We believe that this programme, which puts them in direct contact with people who have gone through what they are experiencing and have come out the other side, will help them to be able to project a positive future for themselves.”
This work is becoming increasingly important, he says, as more and more cancers are being cured. “We need to prepare patients to acknowledge that these will be difficult months or years, but that going through the treatment will be worth it, as they will be able to close the door on cancer, put their experiences behind them and go back to their daily activities.”
Spreading progress through guidelines
While new treatments have played a role in improving survival rates, Gligorov believes that improved organisation of care has also been key, and that working according to multidisciplinary guidelines is the cornerstone of well organised care. Guidelines are particularly valuable for physicians who are working within structures that do not have access to the full range of expertise and specialties found in larger centres, he says. “In some countries and hospitals, cancer patients may be treated by general oncologists, or by physicians who are not even specialised in oncology. For me, guidelines are of highest importance for these people, and it means providing them with clear information about what we know, what is the state of the art, what is possible and what is potentially risky.”
Collaboration between disciplines is one of the things that first attracted Gligorov to a career in oncology. “The feeling that you are working in a team and all going in the same direction was very important for me,” he remembers. Twenty years ago, however, while the various care providers did work very closely, with a lot of interaction and discussion, the whole effort was not formalised in guidelines in the way it is today. As he explains, the organisation of cancer care has inevitably had to evolve rapidly in response to the availability of novel treatments and advances in understanding of the disease.
Gligorov has played an important role in developing some of these guidelines, at an international level as well as specifically for use in France. He has been on the panel of the St Gallen Breast Cancer Conference – which develops consensus guidelines for the care of people with early breast cancer – as well as the International Consensus Conference for Advanced Breast Cancer (ABC) – the first initiative to develop guidelines for treatment of advanced disease, which has now met three times. “Both St Gallen and ABC are very interesting, because they promote the sharing of knowledge and expertise, with experts coming from different parts of Europe and the world. We see that people view situations from different perspectives depending on their cultural or political backgrounds, and obviously these factors contribute to the recommendations that come out at the end of the process.”
Of particular interest in the ABC Conference is the role patients play in the process. “Having this confrontation between what we as doctors think and what the patients think, having a photograph of both sides of the picture, is incredibly useful, because it helps balance the recommendations. We sometimes find ourselves being more modest, or strict, in our recommendations, having been able to hear the patients’ experiences and viewpoints.”
Gligorov’s personal history in breast cancer is closely associated with the introduction of clinical guidelines for breast cancer geared specifically to the French system. The guidelines conference, held annually in the beautiful medieval town of Saint Paul de Vence, near Nice, emerged out of one of the very first educational courses in breast oncology, founded more than 30 years ago by two of Gligorov’s close friends, breast oncologists Moise Namer (Nice) and Marc Spielmann (Paris).
“Having this confrontation between what we as doctors think
and what the patients think helps balance the recommendations”
After 11 years of the course, which had been part of the original teaching programme of the newly founded European School of Oncology, Gligorov and Namer decided to develop national guidelines for early and advanced breast cancer, which became known as the Saint Paul de Vence guidelines. “Breast cancer experts from France and other French-speaking countries are brought together every year and asked to answer specific questions identified by the scientific committee, and every two years consensus guidelines are produced.”
Gligorov sees this work as a central part of his investment in breast cancer education. “Moise [Namer] is one of the top breast cancer specialists in France, and probably in Europe. When you talk to him, you have the feeling you have a large chapter of breast cancer history in front of you. As far as Saint Paul de Vence is concerned, I am merely trying to continue what he built.”
A universal oncologist
Born in France to Yugoslav parents, Gligorov regularly visits colleagues and family members in Macedonia and neighbouring countries. These ties have given him direct insight into the challenges these countries face in medicine in general and in oncology in particular. Beyond that, they have no doubt helped foster a huge appetite for learning about, and interacting with, people from different cultures. Gligorov says he considers himself very fortunate to have had access to books, to be able to learn, and to travel. He is fluent in French, English, Macedonian, Serbian, Croatian, Italian, Russian and Bulgarian.
So when he started exploring ways to help countries with less developed health systems to improve the quality of their cancer care, he looked for solutions that could benefit the region as a whole. This was the idea behind AROME, the Association of Radiotherapy and Oncology of the Mediterranean Area, launched in 2006 with the aim of promoting knowledge and development of oncology around the Mediterranean basin, covering countries in southern Europe, the Balkans, the Levant and north Africa. “These countries share a lot of common history and values,” says Gligorov, “and the idea was to create a network to share experiences and promote exchange of information on education, care, epidemiology and access to innovation.”
“In the most developed countries discussions in oncology often revolve around the approach towards certain important drugs,” Gligorov explains. “But there are a lot of countries where the prime concerns are rooted in the basic organisation of care, such as ensuring that screening programmes are in place or that there are quality surgeons and radiotherapy machines.”
There is a high level of frustration in these countries, he adds, “because they are receiving information from the internet on trial results and new drugs, but they simply cannot afford them.” This frustration is compounded by the much higher proportion of cancers diagnosed at a late stage. “The less developed the country, the more advanced disease there is, and the more drugs you need. In developed countries, it is common to have mostly diagnoses of early breast cancer, which may be cured with surgery and radiotherapy alone, and potentially some endocrine treatment. But this is pretty rare in the Mediterranean area, where population-based education programmes on prevention and early detection are generally absent.”
AROME was founded by Gligorov together with two good radiotherapist friends, Yazid Belkacemi (Paris) and David Azria (Montpellier), with the support of Abraham Kuten, a radiotherapist from Israel. With members based across 21 countries on the Mediterranean rim, the association organises educational seminars, as well as exchange programmes between hospitals in the member countries.
It has also started to provide guidance on access to cancer care innovations in emerging countries, with a first meeting on this subject held in Montenegro last year. “Following this meeting we are putting together a paper that sets out guidance on the key areas that we believe need to be addressed to improve cancer care in each country. There are recommendations on prevention, screening, organisation of the multidisciplinary team, quality-assured centres, as well as criteria for identifying the most efficacious drugs.”
While this may sound like it overlaps with the work already undertaken by the World Health Organisation, with its Essential Drugs for Cancer Chemotherapy list, and by the European Society for Medical Oncology, with its recently devised Magnitude of Clinical Benefit Scale, Gligorov argues that tailored guidance is needed for the AROME countries. “The paradox is that the rich countries are trying to tell the poorest countries what they need and what they do not need. But the epidemiology of the poorest countries is such that they have specific needs when it comes to cancer drugs, which are different from our needs.”
He argues too that the learning process is by no means all in one direction, in particular when it comes to understanding the values and priorities of patients. “In the large cities of western Europe, we have sometimes quite significant populations of immigrants from the Mediterranean countries. Learning about their perceptions of disease, and of cancer, is highly beneficial and helps us tailor treatments to specific cultural settings here in France.”
It’s a comment that neatly sums up Gligorov’s whole approach to quality cancer care. Whether it’s about doing your best for the patient in front of you, or getting the best results from cancer services as a whole, there are no universal answers – it requires making the effort to understand each specific situation, and communicating and collaborating to find specific solutions.