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What patients ask for and what they do to reduce distances

The point of view of the associations

Annalisa Scopinaro

President of the UNIAMO- the Italian Federation of Rare Disease Associations

Silvia Tonolo

President of the ANMAR- the National Association of Rheumatic Patients

By June 2021August 4th, 2021No Comments
Photo by Lorenzo De Simone

Overcoming the rarity threshold

 

Sars-cov-2 demonstrated how a healthcare model that relies excessively on hospital-based services is unable to sustain the shock of a pandemic, often leaving communities feeling stunned and abandoned without clinical or medical support. It is therefore necessary to create a new system of support services that is able to adapt its response based on the individual needs of patients, even through the use of innovative tools. This would entail the following: home-based support with remote monitoring systems, wherever this is feasible; provision of local healthcare services with the support of community nurses; information exchange at the various levels of assistance through the use of telematic systems; and finally, the creation of a national healthcare database. It would be essential to have a network based on these principles for cases of rare pathologies, which require specific expertise as well as close care provision.

The UNIAMO Federation is working on updating the National Plan for Rare Diseases with the aim to implement these exact aspects in the care provision model and in the program it is writing. It collaborated on a national level to ensure that rare diseases would be mentioned in the document on telemedicine made by the National Institute of Health, which was also approved in the State-Regions Conference. Furthermore, it welcomed the motions approved in some regions around a telesupport and telemedicine charging system that supports the pay of healthcare staff, whose work is often underestimated. During the pandemic, in cases of rare diseases with highly specialised care needs, it was not uncommon to see doctors keeping in contact with their patients through smartphones and WhatsApp messaging.

Telemedicine might actually bring different benefits. Firstly it enables a follow-up consultation between patients and the relevant centre that is often far away from their domicile. Secondly, it allows referrals to be made by the specialised centre to the general practitioner/paediatrician and to the local healthcare unit or the local hospital. This enables the provision of continuous support and the gradual training of the operators based in these facilities, which the entire system benefits from. A system that integrates telesupport and telemedicine, and the use of medical vital sign monitoring devices in the patients’ home, would be essential to provide a type of healthcare that is increasingly closer to people. Furthermore, let’s not forget that some of the hope to treat conditions that do not have any known therapy come indeed from digital medicine.
However, on the other side of the coin we know that more than a quarter of households in Italy do not have Internet access. This means that a service designed to reach as many people as possible would risk excluding even further the more vulnerable population groups such as the elderly or those living in difficult social contexts. Another aspect is the importance of a direct doctor-patient relationship: in a telemedicine context being able to offer empathy is essential to guarantee a person-centred approach, even from a distance.

 

Annalisa Scopinaro
President of the UNIAMO- the Italian Federation of Rare Disease Associations

Creating a dialogue between the various systems in order to listen to patients with chronic conditions

 

Patients affected by a rheumatologic condition require chronic care. Managing the chronicity of such pathologies requires all the relevant parties that rotate around the patient to be involved in the treatment process. The new IT technologies available today enable you to share data and information remotely, allow doctors to organise the appropriate treatments and, last but not least, ensure that patients with chronic conditions are looked after in a complete and all-rounded manner. These technologies represent a key factor to assist the groups of healthcare and social operators that are spread around the different local services supporting the patients/citizens who are engaged with their own treatment journey. When utilised correctly they can simplify the work of doctors and pharmacists as well as collect and organise complex data that are useful for diagnoses and treatments, the continuous consultations and interactions with patients, and even research. In Italy there are over 150 systems that collect epidemiological and medical-scientific data.

Today our challenge is to make the existing platforms used in general and specialised branches of medicine inter-useable, in compliance with the ownership of data and individual organisational autonomies. The aim of this is to create a dialogue between the different systems and the relevant parties involved in the treatment journey of chronic patients. With this in mind, ANMAR started the “TESSERE (Rheumatology Healthcare Service through Telemedicine)” pilot project. This was achieved in partnership with the Rieti ASL (Local Health Authority), the SIR (Italian Society of Rheumatology), the FIMMG (Italian Federation of General Practitioners) and the FEDERFARMA (Italian Federation of Pharmacists) that indicated their willingness to make the platforms they use for chronic patient management inter-useable. The National Centre for Telemedicine and New IT Tools of the National Institute of Health also participates to the project as a technical adviser.

The creation of a single online platform would achieve the following. It would help to provide continuity of care to patients with inflammatory diseases through the integration of the various levels of care, especially by ensuring communication takes place between the treating specialist and the general practitioner. It would connect support facilities (excellence centres, day hospital facilities and admission wards, local specialist services and general surgeries) through shared operational systems. It would keep track of patients affected by chronic inflammatory conditions and monitor their progress through the different stages of diagnosis and treatment. In cases where patients require support around mobility it would enable them to get in contact with their general practitioner or their treating specialist in line with a shared procedural system. It would enable to monitor the flow of patients in the support network both in and out of the region.

The ultimate objective was to help create equal access to care even for the most remote areas, better continuity of care through multidisciplinary cooperation and better quality of life for patients affected by chronic conditions.

 

Silvia Tonolo
President of the ANMAR- the National Association of Rheumatic Patients

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