Patients are no longer passive subjects of research but protagonists and guarantors. A paradigm shift in medicine recently marked by a new publication, the Patient-Generated Hypotheses Journal, whose authors are, together with doctors and researchers, sick people. Which can also revolutionize the relationship between doctor and patient. What does it mean concretely? This was discussed at Tempo della Salute, underway in Milan at the Museum of Science and Technology, during a meeting When patients become researchers, moderated by Luigi Ripamonti, with Paola Mosconi, head of Partecipasalute, a research project coordinated by the Institute Mario Negri of Milan; Andrea di Ciano, head of scientific research at the Giancarlo Quarta non-profit foundation; Alessandra Cerioli, activist of the European Aids Treatment Group and of the Italian League for the fight against AIDS (Lila).
No longer passive subjects of research
At the basis of the Patient-Generated Hypotheses Journal, a true scientific publication, there is a principle: a patient is not a passive subject of the research, but becomes himself the protagonist and promoter of the research, and its guarantor. This also changes the relationship with the doctor. With what implications?
The push to start this initiative was given by the pandemic: it is no coincidence that the first issue of the magazine was dedicated to Long-Covid which, in fact, was recognized and identified by the patients themselves.
The effects of doctors’ words on patients
How can it improve the relationship between doctor and patient? Andrea di Ciano, from the Giancarlo Quarta onlus Foundation, which for years has been involved in and produced high-level studies on the relationship between doctors and patients, explained: We have studied in the field of neuroscience, with functional magnetic resonance imaging (fMRI), the effects produced by cerebral level from the doctor’s words on the patients, and given that these effects are positive if the words are positive, negative if the words are negative. We continue to collect scientific evidence on how a good relationship between doctor and patient can produce quality care, improving the well-being of sick people and therapeutic responses, but we are also committed to translating the results of these studies into practical applications – a lot of evidence have been collected in the literature – bringing improvement projects to hospitals and places where care takes place.
Words as therapeutic tools
The doctor-patient relationship is part of the treatment. Not something accessory but part of the clinical act – reiterated di Ciano -. In life we cannot fail to communicate, we do it not only with words but also with posture, behaviors, even with silence, since there are empathetic silences and “cold” silences, which create detachment. The relationship concerns the way in which the content is communicated. In a clinical context – be it the communication of a diagnosis or a therapy – even negative news, for example, can be communicated in a way that gives hope and trust. Words are therapeutic tools that can create positive or negative consequences. A quality relationship satisfies patients’ needs.
The representative of the Giancarlo Quarta Foundation thus summarized, in five categories based on scientific literature, the main relational needs reported by patients and the most suitable relationship methods. First of all, patients need understanding, so the clinical picture must be explained to them in an understandable way; they want to participate in the clinical process, not feel alone; then, there are the aspects that concern the private sphere, therefore the importance of feeling emotional closeness and being concretely helped; and again: they need to be listened to and considered as a person; finally, they would like to be helped in decisions, that is, knowing what to do and how to do it.
Involving patients in research, why it is important
In fact, patient and citizen associations are still little involved in research processes, as Paola Mosconi explained.
Yet, a study published in an authoritative scientific journal, the British Medical Journal, recalled the importance of patient participation in the research process to achieve better results – he underlined -. The more the research (starting from the protocol) is constructed together, the better the results will be. The patient may be interested in outcomes that are, however, underestimated by doctors and researchers.
Are doctors ready to accept this new role of patients? Mosconi reported: From a survey of oncology researchers from seven European centers to test their knowledge on public and patient involvement, it emerged that three-quarters of doctors knew this area, the remaining 25% did not; in particular, it emerged that young researchers are less sensitized than their older colleagues. Furthermore, only half of the interviewees promoted initiatives to encourage public and patient participation.
People with HIV or AIDS still excluded from clinical trials
Participating in clinical trials is essential for the development of better treatments. Even today, people with HIV are excluded from the majority of clinical trials for other pathologies, which must demonstrate the effectiveness of treatments, said Alessandra Cerioli, who also explained the objectives of the Belong advocacy project, aimed at reducing discrimination against people with HIV. HIV, so that they can participate in clinical trials on pathologies that, especially as the years go by, they may have to deal with in real life. The paradox is that today, in countries where antiretroviral therapy is available, people almost no longer die from AIDS, but continue to die from other often unrelated pathologies, which affect people with HIV to a greater extent than the rest of the population, but drugs for these pathologies are not tested on those with HIV. We are fighting to try to eliminate the serological exclusion criterion based on being a person with HIV, and replace it with a clinical inclusion criterion and therefore mainly on the absence of AIDS.
November 12, 2023 (modified November 12, 2023 | 3:38 pm)
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