The presentation of the First Social Report in Oncohematology was held on Monday 13 November in Milan: an analysis of the messages that have been posted on the Internet for a year regarding oncohematology and the main oncohematological diseases. The analysis was commissioned by the Aladino Onlus Infinfovita and Lamp Associations, in collaboration with the Lombardy Region’s Department of Welfare.
In the last 12 months, 59.3 thousand messages have been posted on the web on the subject of oncohematology. These are daily conversations, from which patients and caregivers get comfort, as well as advice and opinions, often able to influence future choices in terms of therapies, behaviors and facilities to refer to.
In addition to general oncohematology (37.5%), the most common topics are lymphoma (33.2%), leukemia (17.3%) and myeloma (12%). The disease is expressed in the various phases that patients experience and the role of family and emotional relationships emerges strongly.
Does e-health represent progress or a potential hazard?
“It’s a question I often ask myself”, explained Davide Petruzzelli, President of Lampada di Aladino e Linfovita. “The asymmetry of knowledge has for years governed the doctor-patient relationship; the web is reducing these differences every day and has become, in many cases, a valuable ally for patients and family members.
If on one hand the confrontation, even on the Net, between patients or family members – not mediated or moderated by doctors or patient associations – is positive because in many cases it represents a sharing of a problem, a moment of comfort and mutual support, on the other hand it can also be risky, particularly when it crosses over into more or less miraculous pharmacological treatments or alternative remedies that are not based on solid scientific grounds and are potentially harmful; and all this happens every day, several times a day and without our knowledge.
The only certainty we have is that this is an irrefutable reality with which we must confront ourselves, and it is counterproductive to ignore it. That’s why we wanted this Report, which represents the first important Observatory of what patients are exposed to every day and will allow us to build the path necessary to better handle a powerful but also insidious tool such as social networks together.
The physician-patient dialogue
Among the speakers was Professor Matteo Della Porta, Head of the Leukaemia Section at Humanitas.
“The patient in our hospital is in constant evolution: not only is he more competent about his condition, but in many cases he also has some deep-rooted convictions that the specialist doctor may find it difficult to counteract. This makes it more difficult to establish a relationship of trust, which is the basis for effective treatment.
In the conversations that take place on the Web, especially for the most sensitive topics such as those that revolve around the theme of treatments of oncohematological diseases, the intervention of the clinician should be a constant, or at least users should have a compass with which to move to seek support, comfort and advice, but in safe and certified environments.
The topic of conversations on the Net is very interesting and current and obliges the scientific world to ask itself: how do hospitals, scientific societies and patients have to and can enter into these dynamics? Their presence would allow patients to have access to secure and verified information, reducing the circulation of false, misleading and even dangerous information”, Professor Della Porta underlined.
