Patient concerns in the digitalization of healthcare: increasing inequality

Digitalization in healthcare holds the promise of optimizing processes and expanding access to care. In some European countries, such as Slovenia, Croatia, Estonia, Poland and Hungary, patients have access to national portals that contain their prescriptions, referrals, discharge letters, etc. In other countries, such as Belgium and Spain, patients have access to 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) legislation aims to improve individuals’ access to and control over their electronic health data, expand the accessibility of healthcare data across borders and use healthcare data for acute care and research patients.

The range of changes that technology could theoretically bring to healthcare is extensive, including the following:

• Faster access and improved coordination of care through a more direct channel with physicians through an online portal.
• Save time by choosing telemedicine instead of an in-person visit.
• More precise diagnoses using AI.
• Reduced burden on frontline staff through technology-enabled capacity optimizations.

On the dark side, there are patient concerns: Will my data be misused? Is it safe? Will I lose connection with my doctor? After all, people, especially those in vulnerable health situations, crave human contact and a reassuring voice.

What are patients concerned about?

The European Patient Forum is an umbrella organization of patient organizations across Europe, with 79 members, including disease-specific patient groups active at EU and national level in Europe.

Patients have a number of concerns about the digital transformation of healthcare, according to Gözde Susuzlu Briggs, program manager at the European Patients Forum:

• Digitalization could exacerbate existing health inequalities, especially where there is a significant digital divide.
• There is a risk of unauthorized access to or breach of patients’ personal health information (PHI).
• A lack of interoperability hinders effective care.
• There are concerns about the affordability and accessibility of digital healthcare solutions.
• The shift to digital healthcare requires an adjustment in the way patients interact with healthcare systems.
• It is very difficult to keep up with innovation in digital health.

“Patient communities know their disease areas quite well, but in terms of other advanced technologies or work around legislation and legal frameworks are topics that are quite new unless it is their profession,” Briggs said.

Improving digital literacy and involving patients in solution development are critical to building public trust and ensuring a positive user experience.

Education, explanation, collaboration

At EU level, several organizations work with and for patients on inclusion in data management and improving digital literacy. Non-profit organisation EUPATI (European Patient Academy on Therapeutic Innovation) provides education and training to increase the capacity and capabilities of patients and patient representatives in the field of drug research and development. In 2023, EUPATI designed one Digital Health Module which provides an overview of digital health and its regulatory framework.

“Based on feedback to date, practice and real-world data appear to be specific areas where patients are struggling to fully understand their role and relevant opportunities for engagement,” said Maria Dutarte, Executive Director of EUPATI.

More workshops and… national marketing?

“I have yet to meet a patient who wants all their healthcare from a computer, myself included,” said Kristof Vanfraechem, founder and CEO of Data for patients – a European organization that focuses on involving data/digital experts who are also patients/care providers in strategic change initiatives. “We see digital as an opportunity to improve human healthcare – tools to bring people – frontline workers and patients – closer together more efficiently and effectively to get or, better yet, keep patients as healthy as possible at all times,” he said. Vanfraechem emphasized that digital transformation is a complex change at a societal level. Data for Patients invests in supporting patient organizations in an approach close to them.

Education and awareness may seem like a simple solution to increase knowledge, manage digital expectations among the patient population, improve solution use, and reduce unnecessary technology-related fears, but someone has to lay the groundwork. Because not all patients are closely involved in patient organizations, this leaves many responsibilities to decision makers who implement and introduce new digital solutions. Laws and regulations are only a starting point for successful digital transformations.

Gözde Susuzlu Briggs is a program advisor for the “Empowering patients” Tstretch the HIMSS European Health Conference & Exhibition 2024, scheduled for May 29-31, 2024 in Rome. Kristof Vanfraechem moderates the session “Leveling Up! Harnessing Health Literacy to Achieve Equity.” More information and registration.