Digitalization in healthcare promises to optimize processes and expand access to care. In some European countries such as Slovenia, Croatia, Estonia, Poland and Hungary, patients can access national portals containing prescriptions, referrals, discharge letters, etc. In other countries like Belgium and Spain, patients can access regional portals. In the Netherlands, Germany and Switzerland, individual healthcare providers offer their own patient portals. This means that if a person visits multiple facilities, they must use different portals to access their health data. The European Health Data Space (EHDS) Act aims to improve individuals’ access to and control of electronic health data, expanding access to cross-border healthcare data gender and use of healthcare data for research and acute patient care.
Theoretically, the scope of changes that technology can bring to the healthcare industry is wide, including:
- Get faster access and improve care coordination by having a more direct channel with clinicians through an online portal.
- Save time by choosing telemedicine instead of an in-person visit.
- Diagnose more accurately with the help of AI.
- Reduce the burden on frontline workers by optimizing capacity through technology.
On the dark side, there are patient concerns: Will my data be exploited? Is it safe? Will I lose connection with my doctor? After all, people, especially those with vulnerable health conditions, crave human touch and a reassuring voice.
What is the patient worried about?
The European Patients Forum is an umbrella organization of patient organizations across Europe, with 79 members covering disease-specific patient groups operating at EU and national level in Europe.
According to Gözde Susuzlu Briggs, program manager at the European Patient Forum, patients have a number of concerns about digital transformation in healthcare:
- Digitalization could exacerbate existing health inequalities, especially in places with significant digital divides.
- There is a risk of unauthorized access or breach of patient personal health information (PHI).
- The lack of interoperability is hindering effective care.
- There are concerns about the affordability and accessibility of digital health solutions.
- The shift to digital health requires adapting the way patients interact with healthcare systems.
- It’s difficult to stay at the forefront of digital health innovation.
“The patient community knows their disease area quite well, but in terms of other advanced technologies or work related to law and regulatory frameworks are fairly new topics unless That’s their profession.”
Improving digital literacy and engaging patients in the development of solutions is vital to building public trust and ensuring a positive user experience.
Educate, explain, collaborate
At EU level, a number of organizations work with and support patients in introducing data management and digital literacy. The non-profit organization EUPATI (European Patient Academy for Therapeutic Innovation) provides education and training to enhance the capacity and capabilities of patients and patient representatives in the field of drug R&D. In 2023, EUPATI designed a Digital Health module that provides an overview of digital health and its legal framework.
Maria Dutarte, chief executive officer at EUPATI said: “Based on the feedback to date, real-world evidence and real-world data appear to be the specific areas that patients struggle to fully understand. their roles and related engagement opportunities”.
More workshops and… national marketing?
Kristof Vanfraechem, founder and CEO of Data for Patients – a European organization focused on bringing data/digital experts who are also patients/caregivers into initiatives change strategy. “We see digital as an opportunity to enhance human healthcare – a tool that brings people – frontline workers and patients – closer together more effectively and efficiently to get or even better keep patients as healthy as possible.” Vanfraechem emphasized that digital transformation is a complex change at the societal level. Data for Patients invests in supporting patient organizations in a way that is close to them.
Education and awareness appears to be a simple solution to increase knowledge, manage expectations about digitalization in the patient community, improve adoption of solutions, and reduce concerns about digitalization. necessary regarding technology, but someone needs to do the foundation. Since not all patients are deeply involved in patient organizations, this puts a lot of responsibility on decision makers to implement and introduce new digital solutions. Laws and regulations are just the starting point for a successful digital transformation.
Gözde Susuzlu Briggs is a program advisor “Empowering patients“tprice at HIMSS 2024 European Medical Conference & Exhibition, scheduled to take place from 29-31 May 2024 in Rome. Kristof Vanfraechem is moderating the session “Level Up! Harnessing Health Literacy to Achieve Equity.” Learn more and register.
