Digital healthcare: APMARR research reveals the impact of digitalisation on rheumatology care
The coronavirus emergency has dramatically highlighted the opportunity for healthcare facilities to make the most of telehealth and digital health solutions.
The benefits of telemedicine
The use of telemedicine and digital health systems offers numerous advantages. It enables optimal remote patient management while also alleviating the burden on healthcare facilities, allowing them to prioritise the treatment of the most critical cases.
The shift from traditional healthcare has highlighted the potential of telemedicine as well as the weaknesses of a healthcare system not yet fully able to leverage it.
This has been confirmed by a study conducted by the National Association of People with Rheumatic and Rare Diseases (APMARR) in collaboration with the EngageMinds HUB research centre at the Università Cattolica del Sacro Cuore, promoted in conjunction with World Rheumatic Disease Day, celebrated on October 12th.
Research Methodology Details
The research was conducted on a sample of 433 patients with rheumatic diseases who were given a semi-structured, self-administered questionnaire consisting of ad hoc indicators of integrated territorial care to measure patient engagement and assess the demographic and descriptive characteristics of the sample.
Demographically and descriptively, the sample consisted of 62% women and 38% men. In general, patients came from the northern regions of Italy, were married or cohabiting, had at least a high school education and were employed.
The data on rheumatic disease showed that 53% of the sample had been ill for at least 3 to 10 years, and 54% of patients had other non-rheumatic diseases in addition to their rheumatic condition.
Main Results
Online Bookings
What can we learn from the data?
- In the last twelve months, 38% of respondents said they had never or hardly ever been able to book a specialist or follow-up appointment online.
- A significant 40% have never or hardly ever been able to find all the data, information and documents they need in their electronic health record.
- Despite the impact of COVID-19 and the perceived push towards digital medicine, 69% of respondents have never or hardly ever had a consultation with their GP via video call (e.g. Skype or Zoom).
- Only 6% said they were always able to do this.
- The situation is identical (69%) for consultations with their specialist.
- Despite this, 31% of the sample complained that they never or hardly ever had access to a specialist clinic near their home.
- And 43% said they never or hardly ever had to wait long to see a specialist (such as a rheumatologist).
«Today, there is no integrated territorial care in rheumatology, and structural and systemic aspects are the first problem to be solved for the more than 5 million Italians with rheumatological diseases, in order to promote early diagnosis and improve therapeutic prospects», emphasises Antonella Celano, president of Apmarr. «Our research has clearly shown that the 3Ts (territory, telemedicine and technology) are the real Achilles’ heel of the so-called regional rheumatology care networks.»
Non-Priority Teleconsultations
The survey also showed that the possibility of teleconsultation, whether with a general practitioner or a specialist, is not generally seen as a priority. Furthermore, the experiences reported were not particularly positive.
«The research shows that most rheumatology patients surveyed report significant needs for improvement in several areas of healthcare, — says Serena Barello, researcher at the EngageMinds Hub — . The problems that appear are often basic and have a high priority, so much so that they overshadow an advanced mode such as digital. This is especially true for people who experience their illness passively and with difficulty, i.e. who, in the language of health psychology, have a low level of engagement».
Level of Engagement
The level of active patient involvement, or engagement, was further explored using a specific scale, the PHE-scale, developed and validated by the EngageMinds HUB.
«This tool measures how fully a patient understands their condition and how actively they can contribute to their care through their attitudes and behaviours,» explains Guendalina Graffigna, a professor at the Università Cattolica del Sacro Cuore and director of the EngageMinds Hub.
Researchers from the Università Cattolica applied the PHE scale to the sample of people with rheumatic diseases and found that more than half (58%) showed a satisfactory level of engagement, having developed a good adaptation to their condition (51%) or even achieving full active engagement (7%).
However, when delving into specifics, the priorities for care shift depending on the “profile” of engagement. For patients in the «blackout» stage, who feel psychologically overwhelmed by their illness and unable to act autonomously, almost all aspects of integrated care are perceived as both important and lacking in their experience.
This situation changes in the intermediate stages of the PHE-scale, «alert» and «awareness» and almost reverses in the «balance» stage, where most care aspects are still seen as important but are experienced positively. The exceptions are the more structural and systemic aspects, which remain a significant issue for all citizens affected by rheumatic diseases.
Conclusions and Key Points
- The ability to engage patients in care decisions and the adoption of a comprehensive care model that considers all patient needs and requirements are strengths of a modern and effective healthcare system.
- The research highlighted structural and organisational deficiencies (chronic in our healthcare system) that hinder the implementation of territorial and digital medicine models, as well as the lack of a preventive approach (proactive healthcare).
- The data collected underlined the need to create a unified working group that could serve as a “General States of Rheumatic Diseases” and be a reference point not only for rheumatologists, general practitioners and pharmacists, but also and above all for patient associations and local administrations.
- Health literacy is one of the pillars of the “#diamoduemani2021” campaign promoted by Apmarr, created by the creative agency Lorenzo Marini Group, directed by Dario Piana, with music by Mariella Nava. This campaign aims to raise public awareness about the daily lives of people with rheumatic diseases, the symptoms of over 150 rheumatic diseases and the importance of early diagnosis.
