December 8, 2022

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Digital Health | Participatory science to improve the quality of life of people with rare diseases: an innovative project by the Istituto Superiore di Sanità and the Ministry of Health

Online project call “Participatory science to improve the quality of life of people with rare diseases”, coordinated by the National Center for Rare Diseases (CNMR) of the Istituto Superiore di Sanità and funded by the Ministry of Health. Citizens, researchers, schools, associations, and institutions can share operational ideas, solutions, techniques, and strategies in service of people with rare diseases, to concretely help them with challenges small and big every day. Ideas and projects are collected in a dedicated site.

The October 5thwebinar forHigher Institute of Health He will talk about the goals and methods of participation. it’s possible sign in The event followed. The webinar will also be running Facebook Direct on page Rare green phone diseases.

The project offers a great opportunity to spread new ideas and supportive solutions in many areas of daily living with illness: Mobility (eg tools or strategies to facilitate movements and physical activities); autonomy and strategies to provide for daily needs; Telecommunications (eg, alternative use of computer aids and applications); Cognitive abilities (eg alternative training methods and innovative learning solutions); Sports and leisure; Emotion management (eg managing stress, anxiety, aggression); Strategies for social, school and work inclusion.

a multidisciplinary scientific committee It consists of citizens, patients and health professionals and selects contributions that are posted on the site and amplified through all ISS channels. Five contributions will also be selected to become videos.

In rare diseases, where knowledge or curative solutions are often lacking, social media can become a vehicle for false delusions or distorted interpretations. On the contrary, they can facilitate the exchange of positive experiences and solutions, which have had an important impact on improving people’s quality of life.

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The participatory science project of the International Space Station and the Ministry of Health can also become a model for other contexts, causing the problem of the false polarization that often arises between science and citizens.

In the 1917 short story, “The hand of the poor patientOne of his characters, Pirandello, said he was considered a smart patient because he didn’t ask any questions. He remembers it Sandro Spenceanti in stimulating an interview In his last bookdifferent confidence“.

The pandemic has shown how trust is a key word, not only in the doctor-patient relationship but also in the relationship between citizens, public health and science. Trust is also an essential component of the media environment. as he remembers Luca de Paz: “There are no passengers aboard the Earth spaceship, said the founders of Media Ecology: We are all crew. Everyone can help: even retweets can pollute, even likes, even posts; Learning to think about the consequences is an achievement that absolutely must be pursued. In a media environment, the good of the individual and the good of society converge“.

In public conversations, often implicitly or explicitly, new digital media are seen as enemies of trust, invaded by fake news, disinformation, and anti-science. Certainly, this phenomenon exists, is relevant and worrisome. At the same time, this kind of thinking about the contribution of new media is reductive and misleading.

In the online communitiesWhether promoted by an organization or simply a network of individual citizens, you can share experiences, emotions, tips and helpful solutions to improve your everyday life.

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Relationship and trust are essential components in building appropriate and beneficial digital environments. But trust is like a gift an anthropologist said Marcel MossAlways requires a counter gift. If we receive a gift, we almost immediately feel the need to return it. The same goes for trust. Health institutions and organizations must trust citizens so that they can receive them in turn.

In sermons on the importance health literacy Often this trust is not there. The assumption is always that a citizen knows nothing or knows little and must be educated. At most, we are interested in understanding how storytelling techniques are used to “explain the science,” not to share it at all.

This model has been problematic by developing a model participatory science (Citizen science) which offers a relational charter in scientific production and communication. Citizens can participate and not just teach. The same phenomena can generate profoundly different experiences, perceptions, and responses. Some are only personal, some are dangerous, and some can be very useful for expanding scientific knowledge and for improving everyone’s quality of life.

Participatory science can be an effective response to building media systems that recognize the value of all, in the gift and reward of trust, that respect each person’s fields and skills. A participatory science project in rare diseases can be a great opportunity to promote the spread of a new relational pact on science.