Authors: Federica Campacci, Stephania Pasa. Editor: Coline Guiol
In italian, "contatto" means “contact, proximity”; "con tatto" means “with tact, with kind”. The hyphen between the two words wasn't a typo: a member of the group insisted on it, as a reminder that reaching patients isn't the same as reaching them gently.
The Con-tatto group has been part of daily life at IRCCS Istituto Romagnolo per lo Studio dei Tumori "Dino Amadori" - IRST in Meldola, Italy, since June 2013. Established by formal decision of the Institute's General Director, Con-tatto brings together patients and former patients who review materials, evaluate new clinical initiatives or research projects, and bring the lived experience of illness into decisions that are usually made without it. As the Institute puts it: "We believe that patients are key partners in the planning and delivery of the services designed for them".
Participation is concrete, not just symbolic. Members have reviewed patient guides, contributed to the Institute's Charter of Services, and proposed practical tools - a checklist to help other patients follow oral drug therapy correctly, for instance. When Con-tatto reviews a leaflet, a printed line on the final version states that it was assessed by the group for clarity: the suggestion is traceable, not just filed away.
No restrictions on age, gender, diagnosis, or stage of illness are applied, and no particular expertise is required - anyone who has walked the path of a patient can join. What the group asks for is simply to share that experience gained serving the Institute and its patients and users.
But Con-tatto is nott a self-help group, nor a forum for complaints: it is a working group, coordinated by IRST's Public Relations Office, where patients and professionals meet as collaborators. Reaching across the gap between clinical/research language and lived experience takes a moderator, patience, and members willing to keep showing up, session after session.
Bringing that experience into the MAYA Project
For MAYA, Con-tatto's contribution has taken the form of a dedicated Living Lab session. A Living Lab is a way of designing not for users but with them: instead of testing a finished product, researchers and designers work alongside the people who will actually use it, from early in the development process, so their perspective can genuinely shape the outcome, not just validate a decision already made.
In this case, Con-tatto members sat down with the IRST team working in MAYA to discuss the iCARE smart mirror itself and the whole integrated system: how it should look, behave, and communicate, and what would make it something patients would actually want to use every day. Their input is helping the project refine the mirror's usability and features from the perspective that matters most - that of the people it is designed for.
A track record in research
MAYA is not the group's first venture into research. Con-tatto members have taken part as speakers at IRST's Clinical Trial Academy, the Institute's annual event on clinical research, bringing the patient perspective on trial participation directly to researchers and clinicians. They have also been asked to review a paper on patient engagement for the JANE 2 Joint Action, and a subgroup is planned to join training and consultation activities for the eCAN+ Joint Action on digital skills in oncology. In the EUNetCCC Joint Action, Con-tatto's involvement is set to grow further still, with a patient representative joining the training committee to help develop dedicated training pathways for citizens, patients, and professionals alike.
Looking ahead
The longer-term ambition goes further still: to make patient consultation a standard, structured step in clinical trial design - involved from the very beginning, including in drafting the documents patients and caregivers will later need to understand, rather than brought in only once a trial is already designed and ready for approval. Built in from the start, research would be shaped from the outset around the real needs of the people it is meant to serve.
Some of the materials co-developed with the Con-tatto Group - patient guides, informational leaflets, and educational resources - are available (in Italian) on IRST's website.
