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A digital tele-medicine service has given Italian people with Parkinson’s alternative access to healthcare during the COVID-19 emergency

A tele-medicine service that has been caring for people with Parkinson’s (PwPs) in Italy during the COVID-19 emergency has been extended to the end of September, with Parkinson Italia (PI) calling for it to become part of the Italian healthcare service.

The result of a collaboration between PI and multiple public and private institutions, ParkinsonCare has enabled homebound PwPs to enjoy free, on-demand care while their regular clinics were suspended as neurologists and other staff were redeployed to look after COVID-19 patients.

Providing nursing and specialist care through a digital platform, the ParkinsonCare service was originally launched in January this year to serve Parkinson’s customers of a major Italian insurance company. But when the pandemic hit and the whole of Italy was locked down, PI asked Careapt, the company that designed the platform and user experience, to make the service available to all PwPs who might need healthcare.

Antonella Moretti, a PI board member who worked on ParkinsonCare with PI President Giangi Milesi and other agencies, said: “The idea developed during the first days of the lockdown, from watching the news and realising that people with Parkinson’s were now stuck at home with no access to the healthcare system, which was tragically disrupted by the pandemic. We realised that tele-nursing could provide real help at a time when social distancing is a must and hospital clinics are amongst the most dangerous places to be.”

Portrait of Parkinson Italia Board member Antonella Moretti
Antonella Moretti

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The idea developed during the first days of the lockdown, from watching the news and realising that people with Parkinson’s were now stuck at home with no access to the healthcare system

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ParkinsonCare offers PwPs access to specially trained Parkinson’s nurses, who can be contacted by phone, email or SMS. If a PwP’s problem cannot be solved through nursing care, the nurse will arrange an online video consultation with a specialist – all without the PwP needing to leave home.

“It operates through a cloud-based, collaborative medicine platform,” said Moretti, who is also CEO of Antonella Moretti Management Consulting. “Each member of the care team as well as patients have private access to the platform via their computer or smartphone.

“Each patient has got a dedicated nurse (plus a back-up), as it is very important to build a strong therapeutic relationship. Once a person gets in touch with ParkinsonCare, he/she fills out an enrolment questionnaire, then a care plan is developed and executed through regular follow-up contact. In addition, PwPs and their carers can get in touch with their nurses whenever they need to, to find out information about the disease, therapy, drug interactions or diet, or to share doubts and concerns as well as to report new symptoms.”

ParkinsonCare nurses
ParkinsonCare staff

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It operates through a cloud-based, collaborative medicine platform. Each member of the care team as well as patients have private access to the platform via their computer or smartphone

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From 12 March to the end of April, ParkinsonCare nurses supported 486 PwPs, undertaking 2,603 interventions, of which 1,763 required nurse management and advice. The remaining 840 interventions entailed helping PwPs with general information, such as how to get their medicines delivered at home rather than going to the pharmacy.

“In about a third of the cases,” said Moretti, “PwPs reported symptoms that required a referral to a neurologist, and if the PwP’s regular specialist was not available, video consultations were given by one of our partner healthcare professionals.”

In such cases, consultations were conducted by neurologists from Milan’s Carlo Besta Neurological Institute, while consultations with physiotherapists, speech therapists, occupational therapists and neuropsychologists were provided by the Villa Margherita S. Stefano Rehabilitation Centre team based in Arcugnano, Northern Italy.

According to Moretti, the service has been well received by PwPs. “The great majority of people found it much easier to make a call or a video-call rather than the usual process: make an appointment, wait for weeks, walk to the car (if you can walk), get in the car (if you can), drive to the hospital, wait in the waiting room and finally get your 20-minute visit and try to stay focused to retain all the information the doctor tells you. People were very happy to just call and get an answer to their questions from their nurses when they needed to or to get access to a video consultation from their living room.

“What appears to be most valuable from a PwP’s standpoint is to be able to reach out for help and expert advice and reassurance when they need it. With Parkinson’s, it is very important to manage anxiety when a new symptom appears or gets worse: they need to understand what’s going on. You can’t wait for an appointment – it might take weeks. We realised the vast majority of people would trade a delayed visit in person for the opportunity to get help quickly.”

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People were very happy to just call and get an answer to their questions from their nurses when they needed to or to get access to a video consultation from their living room

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Although the service was originally planned to run until 12 June, with the health service now operating at limited capacity due to social distancing, and long waiting lists, the decision was made to extend it. PI and ParkinsonCare are now hoping that the Italian health authority will  acknowledge the value of such an initiative and deliver it themselves.

Giangi Milesi, PI President, said: “The tele-healthcare service has proved to be an important asset for people with Parkinson’s, not only during the COVID-19 crisis, but also for the future. We really hope that this immense tragedy will lead to a shift towards new care models.”

Portrait of Parkinson Italia President Giangi Milesi
Giangi Milesi

ParkinsonCare was developed in 2019 through consultation between Parkinson's patient associations – coordinated by Milesi – and Dr Francesca Mancini, Medical Director of Careapt, a startup founded by Zcube, the research arm of the Italian pharmaceutical company Zambon. Dr Roberto Eleopra and Dr Roberto Cilia from Carlo Besta Neurological Institute, as well as Dr Daniele Volpe from Villa Margherita, and several members of the LIMPE-DISMOV Academy were also involved in the development of the service. There were also interviews with more than 500 neurologists from across Europe as well as workshops with PwPs, carers, and medical staff.

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The tele-healthcare service has proved to be an important asset for people with Parkinson’s, not only during the COVID-19 crisis, but also for the future

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Further reading:

  • ParkinsonCare website
  • Parkinson Italia website
  • Careapt website 
  • Carlo Besta Neurological Institute website
  • Villa Margherita S. Stefano Rehabilitation Centre website
  • LIMPE-DISMOV Academy website
  • Bloem B R, Henderson E J, Dorsey R, Okun M S, Okubadejo N, Chan P et al., Integrated and patient-centred management of Parkinson's disease: a network model for reshaping chronic neurological care. The Lancet Neurology 2020 Jul 01. Vol. 19(7); 623-634 – view abstract

Do you think tele-medicine could be a better way to care for people with Parkinson’s in the future? Email info@epda.eu.com and tell us your stories.

The EPDA is sharing this article for information purposes only; it does not represent the EPDA’s views and is not an endorsement by the EPDA of any particular treatments, therapies or products.

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