Informed patients are empowered patients

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Published: 19 Jun 2017
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Prof Gabriella Pravettoni - European Institute of Oncology, Milan, Italy

Prof Pravettoni talks with ecancer at IFCPE 2017 about the recent shift towards personalised medicine and patient empowerment through information, knowledge and decision making.

Prof Pravettoni goes on to discuss research that shows that empowered patients quality of life is greatly improved compared to patients who have not been empowered throughout their care.

For example, Prof Louis Denis spoke with ecancer about improving quality of life for men with prostate cancer through the European Prostate Cancer Coalition.

Empowering the patients is the new goal we have as psycho-oncologists, surgeons, physicians, researchers working on oncology, because we are going in the direction of the right answer to the right patient, to that particular person, to their personalised medicine. If we have personalised medicine, we need to give an answer to a particular person. This means that we have to empower the patient, involve, engage the patients in having a great part in taking decisions. We need to become counsellors of the person that, since they are empowered, can choose on his or her life.

How do you empower the patients?

What we are developing is a contributor in being informed as patients, knowing exactly things on his or her pathology, and overall giving to the patients three or four options – not too many, but enough to choose how to go on for the quality of life and respect of beliefs and the values of that person.

Is there evidence that an empowered patient has a better journey through cancer care?

There is research we did in different countries in Europe – the UK, France, Germany, Spain, and Italy – what we saw is that there are many unexpected needs and unmet needs of patients, when and where the patients are not empowered. There is a big difference between patients empowered and not. We did research in five different countries in Europe – Spain, Italy, the UK, France, and Germany – and what we saw is that if the patients are empowered they better behave with their life and their quality of life in the sense of managing better their cancer. For example, they have less anxiety, less anger, they know how to choose between different options we give to them. They have better habits, they eat healthy, they move, they do good things, they enlarge their communities. They don’t stay only in the family just talking with their general practitioners but they are able to have a social life and go back to work and have friends and think into the future behaving better.

Could you discuss your involvement in setting up guidelines for patient empowerment?

During this forum the aim was to create an agenda for Italy, a specific country, because in Italy we have many problems on the side of the psycho-oncologists, for example, because we know that there are psycho-oncologists just in the breast unit and nowhere else. This is true for some centres of excellence – not for many, not for all, overall. Even in the relation between physicians and patients we have problems, because we don’t have in the instruction at university a course for every student to develop a good relation with patients. One of the results of the unexpected and unmet needs of patients, what they say, is that you have physicians that ask questions and hear the patients, but they don’t listen to the patients. They listen just to give an answer and don’t listen to understand the needs of the patients. Even on the side of the instructions we are trying to do some specific things at universities to have better physicians in the future. For example, on the side of the clinical institute to have more psychologists helping people in taking decisions – so consultancy for the patients and for their families in Italy. At the European level, we are even acting on an agenda with the European Commission, with the different countries, to share decisions in every country and to have just one policy – so acting even at the politicians’ level.

What were some of the highlights from this meeting?

It was very interesting, because we have many differences between the different countries. For example, in Italy, we have chemotherapies for every patient. This is not true in Romania for example, that is even in Europe, so the accessibility to chemotherapy is a big issue that we have. But even the support we can give to the patients, even the fact that the organisation must take care of the patients and put the patients at the centre. We are doing big actions, even at the political level, to have a good answer for the patients.

Do you think this meeting will continue in the future?

I think that this meeting was really successful. We had more than 600 people involved. I have to say that many people at different levels, so on the side of the physicians, on the side of patients, on the side of institutions, and on the side of political and pharma, different organisations were involved. The big success, I think, will continue with a second edition.