An Apmarr – Universit Cattolica survey highlights the shortcomings in these services encountered by patients. The association asks to strengthen the offer
was among the protagonists of the pandemic, helping to avoid that default in health care that was feared especially during the closure of the country. Telemedicine, and digital health solutions in general, have shown all their potential but also the weaknesses of a health system that has not yet been able to bring them to full capacity. The confirmation comes from a study conducted by EngageMinds Hub, Research Center in the Psychology of Consumption and Health of the Catholic University, on a sample of 450 rheumatological patients. The survey was promoted by Apmarr – National Association of People with Rheumatological and Rare Pathologies – on the occasion of the World Day of Rheumatic Diseases which was celebrated on 12 October last.
Online reservations and ESF
What do the data tell? In the past twelve months, 38% of respondents have never or almost never been able to book a specialist visit or checkup online; and as many as 40% never or almost never managed to find all the data, information and documents they needed in their Electronic Health Record. Despite Covid-19 and the alleged push for digital medicine, al 69% of the interviewees never or almost never could make a visit with the GP via video call (for example on Skype or Zoom). On the contrary, only 6% declare that they have always done so. Same situation (69%) in the case of visits with their specialist. Yet well 31% of the sample complained of never or almost never having access to a specialist clinic
close to home and 43% declare that they have never or almost never had short waiting times to be seen by a specialist (such as a rheumatologist). Today integrated territorial assistance in rheumatology does not exist and the structural and system aspects are the first problem to be solved for the more than 5 million Italians with rheumatological diseases, to favor early diagnosis and increase therapeutic prospects, he stresses Antonella Celano, president of Apmarr. Our research has clearly shown how the 3Ts (Territory, Telemedicine and Technology) are the real Achilles heel of the so-called regional rheumatological assistance networks.
Digital visits are not a priority
The surprises about digital medicine, however, do not end there. Because the investigation also revealed something else: the possibility of carrying out a television broadcast, both with the general practitioner and with the specialist, is considered on average not a priority. And, in any case, the experiences recorded were not particularly positive. Research shows how most of the rheumatic patients surveyed there is a strong need for improvement in various areas of health care — dice Serena Barello, researcher at EngageMinds Hub -. The problems manifested are often basic and accompanied by a high priority, so much so as to obscure an advanced mode such as the digital one. This is especially true for people who passively experience their illness, with difficulty, that according to the language of health psychology they have a low level of engagement.
Level of involvement
Engagement, that is, the level of active involvement of patients has been the subject of further study. We have worked a lot on this issue over the years. And for some time we have validated a scale (PHE-scale), that is, a tool capable of measuring how much a patient is fully aware of their disease and how much they can actively contribute to its treatment through their attitudes and behaviors, explains Guendalina Graffigna, full professor of the Catholic University of the Sacred Heart and director of EngageMinds Hub. The Cattolica researchers applied the PHE-scale to the sample of people affected by rheumatic diseases and it emerged that well over half (58%) show a satisfactory level of engagement, because he developed a good adaptation to his own pathological condition (51%) or even reached the full condition of active involvement (7%). When you go into detail, the assistance priorities change according to the engagement physiognomy. Cos in blackout patients, i.e. among those who find themselves psychologically crushed by their illness and unable to act independently, virtually all integrated care factors are perceived as important and at the same time lacking in their own experience. Situation that changes in the intermediate stages of the PHE-scale of alertness and awareness to almost overturn in patients in equilibrium, where most of the assistance requests are always seen as important but experienced positively: the more structural and systemic aspects that represent the real problem are an exception of all citizens suffering from rheumatic diseases.
Model
The accentuated discrepancy in the order of care priorities by patients according to their state of important engagement own in the elaboration of a model of territorial assistance; that is the goal that Apmarr sets itself with this research project, points out Professor Graffigna. Because it is clear how this model will have to be articulated and declined according to how the patient shows himself involved actively or not in their therapeutic project. I try to give an example: activating digital medicine tools will prove superfluous or, worse, counterproductive in “blackout” patients who have very different priorities; while it will be profitable in heavily engaged patients, who will indeed see an app or a telemedicine link as a stimulating way to increase their engagement. According to Antonella Celano, therefore I need it, thanks also to the huge resources of the National Recovery and Resilience Plan destined to strengthen Italian health, to build a model of integrated territorial assistance for Italian rheumatology based on initiative healthcare, in which the general practitioner activates the care network based on the real needs of the patient. A health that therefore goes towards the patient, compared to the current model that awaits him in the hospital.
The health literacy campaign
The general states of rheumatological diseases are the goal to which Apmarr aims. We need to set up a unique working group and this is the aim of the project “Being 3T in rheumatology: Telemedicine, Territory, Tech”. Rheumatologists, general practitioners, pharmacists, patient associations, Regions and the Government united all together to make the best use of the funds of the NRP in favor of people with rheumatological and rare diseases, says Antonella Celano. Digital health is one of the pillars of the project but in order to make the most of it there is also a need for specific literacy, in addition to health literacy more generally. For this the association has decided to realize an integrated communication campaign, conceived and produced by Lorenzo Marini Group, with the strategic participation of Axess Public Relations. The # diamoduemani2021 campaign a multimedia and multichannel project. In the center, the spot Free Rope that tells the disease through images and photographs.
November 3, 2021 (change November 3, 2021 | 20:29)
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