TELEMEDICINE: THE EXPERIENCES OF PATIENTS, FAMILY MEMBERS, PROFESSIONALS, DECISION MAKERS – Research Area Health and Healthcare ISTUD

Telemedicine and digital health are the transversal solution promoted by the institutions (AGENAS, Ministry of Health and Regional Institutions) for the relaunch of the National Health System post covid, being able to dispose of the considerable resources in the National Recovery and Resilience Plan (15, 6 billion allocated for the “Health” mission of the Plan, of which 8.6 billion for innovation and digitalisation and 7 billion for proximity networks, facilities and telemedicine for territorial assistance).

The aim of the ISTUD research on Telemedicine, presented in an online event with health system professionals, was to understand the actual experience and narrative of people who used telemedicine, and technological tools in general, during the SARS-COV2 pandemic.

From July 2021 to March 2022, 110 testimonies were collected involving all actors of the health ecosystem: patients, caregivers, health professionals, life science companies, researchers and health policy makers.

Analyses of the narratives revealed numerous positive aspects of using technology to support medicine. One particularly striking example is the ability to convey empathy even through the remote instrument; and in many cases empathy was experienced more in deferred time, because according to the caregivers, ‘being able to focus only on the face of the sick person was helpful in connecting with the patient’s narratives and emotions’.

Among the problematic aspects is the impossibility of using telemedicine for first visits or emergencies, i.e. in cases where there is a need for real physical contact.

Questioning the humanisation of technological tools and the need to take advantage of telemedicine opportunities is extremely important, but the starting question, says Dr. Fabrizio Gervasoni, member of the Board of Directors of the Order of Physicians of Milan and Province, physiatrist at the Sacco-Fatebenefratelli hospital, is: “Will we doctors be able to remain clinical, to have contact with the patient, proximity with the patient, even in a setting such as telemedicine, where ‘tele’ in itself represents a distance? The challenge is to understand how, through doctors’ languages, we can maintain the perception of empathy with the patient.

The research conducted by ISTUD Sanità e Salute shows that empathy is a very present element when working on training in digital health, humanisation remains and patients feel heard and understood even at a distance. Fundamental is, as Maria Giulia Marini, Scientific Director of ISTUD’s Health and Healthcare Area, explains, not to dehumanise and “to ensure that the doctor-patient relationship remains relevant at all times, not only, unfortunately as we often record from the narratives, when the patient is frail”.

The telemedicine tool is particularly useful between one visit and the next; useful, therefore, to support and sustain a chronic illness that needs continuous monitoring precisely to overcome the logistical and bureaucratic problems that public health has.

Among the actors involved, those who are least satisfied with telemedicine and who have put up the most resistance are the caregivers, who are not only those who take care of the patient, providing physical and psychological assistance, but also have to worry about the setting of the space, the organisation of the light, the computer, the video camera and in general the remote connection. And so, the solution proposed by Francesca Moccia, deputy secretary general of Cittadinanzattiva, is to try to involve more caregivers who take care of the sick person, proposing the active participation of proximity medicine, integrating in the care framework also the role of the general practitioner, who often, argues Maria Giulia Marini, is at risk, if care only leaves the hospital to reach directly the patient’s home, of being cut off from the continuity of care.

On the side of the sick person, argues Massimo Caruso, member of the Board of Directors of AiSDeT, the Italian Association of Digital Healthcare and Telemedicine, telemedicine is simplifying, reducing distances and paperwork, and is a different way of organising the care pathways that exist between the healthcare facility and the patient: “It is important to start with healthcare management to reorganise the pathways, not just individual local departmental experiences”.

It is also found, particularly from the narratives of healthcare professionals, that the technological tool of WhatsApp is useful, but problematic, since it is neither regularised nor monitored. This makes it an invasive and infiltrating tool, no longer connected to telemedicine as a transversal solution that shortens distances and reduces bureaucratic problems. There is a need for regulation of the technological tool, says Marco Zibellini, scientific director of Farmindustria, which is able to unite the ecosystem of all the players involved: patients, caregivers, healthcare professionals and decision-makers. “It is important to see the therapeutic part, but equally important is the management of the patient’s data and his health record, guaranteeing privacy and data security.”

In this regard, Farmindustria, in collaboration with AGENAS, the National Agency for Regional National Health Services, has come up with the idea of creating a digital telemedicine platform involving an agreement between all the social actors involved in which ‘healthcare is directed towards the connection between prevention, access to care, effective treatment, and follow-up care,’ says Laura Franzini, medical director of Chiesi Italia. There is a real integration of the healthcare system that must succeed in combining effectiveness and efficiency towards the humanisation of care.

Telemedicine is a medical tool and an added value, but ‘it has to move away from the turnkey model, usually proposed by companies to healthcare companies, towards an agreed model, where there is more room for flexibility, for technological solutions adapted to the individual care context and to the different cases of patients to be treated,’ says Lorenzo Terranova, medical director of Confindustria DM. ‘Having read the narratives, one understands that there is a need for thought leadership and not just bureaucratic automatisms’.

The research showed that the teaching of telemedicine to health professionals must be active and experiential and not only conveyed through passive guidelines that remain unfulfilled: in fact, resistance to change is still strong among many health professionals. The training of doctors thus becomes a therapeutic opportunity that complements the clinical assessment carried out in the presence. The narratives collected indicate that the technology must be simple, the language used must communicate transparency, clarity and unambiguousness; the responding doctors wrote that the word “dematerialisation” cannot be used, today to indicate the prescription, tomorrow to indicate the patient.

It is necessary to broaden horizons and aspire to a training that involves the entire citizenry, from young to senior patients, from the most tech-savvy to the least experienced doctors, a training that is not only passive in the use of technology, but an active training that also includes change management.

The field testimony of BTS Engineering shows that through telemedicine and telerehabilitation there is more connection between the actors involved, as the digital platform is able to reach more patients on the territory and is thus more sustainable. The difficulty, says Cristina Fiorucci, a member of BTS Engineering, lies in understanding what is the best dosage of technology use, without it taking the place of the treating physician and the clinical approach. In this case, telerehabilitation must be understood exclusively as a tool and means that does not get in the way of clinical methodology, but accompanies it and integrates it in the construction of psychophysical and social well-being.

Good news, then, the pandemic has acted as a catalyst for Digital Healthcare, which wants to be accessible to all regardless of geographic distances and at the same time economically sustainable: it is now necessary to revise the pathways by keeping them ‘blended’, both in presence and at a distance, and not to think that telemedicine is the panacea that offers the solutions to the problems of Italian healthcare.


A recording of the results presentation webinar is available on our Facebook page at
https://fb.watch/e4kEccZl9d/

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