“Nothing about us, without us” is the headline that patients and citizens across Europe are stressing, especially when the topic is research and data gathering. The Puglia Pilot site is actively including patients and citizens in the co-design of research in order to focus its studies on the best way to improve people’s quality of life.
The inclusion of patients and citizens in the co-design of research is what the Pilot Puglia team is focusing on in Italy to ensure that the studies carried out address the best way to improve people’s quality of life.
The first study of the Pilot Puglia is about to be launched in Casa Sollievo della Sofferenza, the historical Hospital funded by Saint Pio of Pietrelcina. It is an observational study with the primary objective of developing a statistical model for the control of type 2 diabetes mellitus, based on the use of both «conventional» clinical parameters and «non-conventional» data from wearable devices.
It will be a “pilot within a Pilot” aiming to involve up to 100 people. It will be here that the first recruitment communication campaign will be tested and disseminated, and patients and doctors will start their alliance to discover the role of wearable technologies to improve the wellbeing of the mind and body.
“Thanks to the cooperation with Samsung UK, we will be able to give to our patients 100 new generation smartphones and smartwatches, that will collect and provide to diabetologists richer, and day-by-day information on patient life style, which is not possible to obtain by relying on periodic check-up visits only” says Francesco Giuliani, head of ICT, Innovation & Research, Fondazione Casa Sollievo della Sofferenza.
Furthermore, there are also two other research studies in the pipeline that will gather data from more than 10,000 citizens. The first study will be dedicated to the experimentation of unobtrusive behaviour monitoring for the early detection of the onset of frailty or other health risks and to enact e-coaching interventions to promote healthy behaviour. The second study will be focused on the continuous and unobtrusive monitoring of health parameters related to Chronic obstructive pulmonary disease (COPD), Type 2 diabetes (T2D), Heart failure (HF) and High blood pressure (hypertension). It will also support patient self-empowerment in “Care Puglia”, the Integrated Care Model for chronicity, introduced by the Puglia Government in 2014.
The three medical use cases mentioned above, will be based on two main pillars: participation and engagement of different stakeholders. Patients and citizen will have a key role, however, health and social care professionals will also take part, with their fundamental role in explaining the importance of big data in the medical breakthroughs of the future and for further improvements in medicine and technology. The Puglia Pilot will also be supported by the University of Utrecht in the study of the complex relationship that links stakeholder values to engagement with technology.
«The medical breakthrough of the future will be increasingly defined by our ability to collect and analyse health data – according to Giovanni Gorgoni, CEO of AReSS Puglia, the Puglia Regional Agency for Healthcare and Social Welfare. “Thanks to Pilot Puglia’s researchers, more than 10,000 patients and citizens in the Puglia Region will get to play an active role in helping us understand how to better use Artificial Intelligence and Big Data to improve quality of life for aging people».
Participation and engagement will play a great role in the Pilot and they will use communication as a trigger tool. Indeed, the first rule of a community is to have equal access to information. Due to this, in March 2021, the Puglia Pilot started the “TecnoDictionary”, a weekly column on social media where the Pilot representatives give their definition of technical concepts such as “wearable technology”, “data driven technology”, “Artificial Intelligence” and many others.
In an additional attempt to ensure the engagement of the Apulian Community, the Puglia Pilot recently launched its Facebook Page (@GKPuglia). The channel is in Italian and it will be the way to disseminate and translate all of the amazing results of the flagship H2020 Gatekeeper Project. Stay tuned for the next steps in the Puglia Pilot!
Meanwhile, keep in touch:
The Pilot Puglia is one of the 8 Gatekeeper pilots and it is composed by Puglia Region, by the means of the Agency for Health and Social Care AReSS Puglia and the technological in-house company InnovaPuglia; the Hospital Casa Sollievo della Sofferenza in San Giovanni Rotondo; Fondazione Politecnico di Milano and Multimed Engeneering srls an innovative firm based in Parma.
Photo: courtesy of ARET Pugliapromozione, Marina di Ugento_Horseback ride1_ph Vincenzo Pioggia