INSIgHTS

Patients In A Rapidly Changing Healthcare Technology Environment

European Patients’ Forum (EPF) wants to increase patient involvement in the digitalization of healthcare. This is a leading theme of the virtual EPF Congress 2021 “Digital transformation of healthcare” (October 26-29). We talked with the President of the EPF, Marco Greco, about patients in a new, digital world.

Since digital healthcare has gained momentum, patients have become more empowered. Could you please name the critical benefits for patients from digital transformation? What new challenges has digitization brought?

Digital transformation has created an incredible number of potential benefits for patients in terms of accessibility, health data, monitoring, services, and followup. Technological advancements are rapidly changing the EU healthcare landscape as a whole, including increasing the use of Big Data and Artificial Intelligence-based tools for public health and healthcare services and research and developing personalized medicine and targeted therapies. The main challenges revolve around addressing ethical issues, ensuring a transparent and accountable policy framework, data governance, a fit-forpurpose regulatory framework, equita-

ble and affordable access for patients, patient involvement in co-designing digital solutions and tools, and generating trust in both the new technologies and the systems that operate and govern them. Thus, while there is a ton of innovation and transformation, it requires a cautious approach.

In the present health system, it is difficult to claim that patients are at the center. So what changes are needed to push health systems towards patient-centricity?

The main issue is that we keep on designing healthcare systems and then, in the end, ask if the patient is happy or satisfied or, even worse, we ask external parties to evaluate the system’s efficiency. At EPF, our message is clear: digital tools should start from the needs of healthcare users and be developed with the users to ensure technology actually facilitates participatory, person-centered healthcare and leads to better outcomes for patients and better value for society.

There are many discussions around involving patients in the development of digital tools. What does “patient-led innovation” mean in practice?

Digital tools should be a resource for patients and not another barrier towards access. Patients began innovating because they couldn’t find solutions on the market that truly met their needs. The solutions that patients and caregivers found on the market were either too expensive or weren’t quite personalized enough for their specific needs. Overall, patients themselves have deep-rooted insight that no amount of user-testing or co-creation could match. Patients also bring true innovation because their only motivation is to make their lives more manageable. We already know that scientific innovation alone is not enough. However, we have not achieved a perfect balance yet. All I do know is that patients should be firmly in the driving seat if we want a solution to truly meet the needs of the patient.

Telehealth deployment increased up to dozens of times during a pandemic - healthcare delivery is becoming increasingly digital, while some digital inequalities are also snowballing. So what should be done to reduce the digital divide? Educate. Simplify. Co-design. We know these concepts very well. However, they have not been applied effectively. To date, we have unfortunately not seen a systematic collection or sharing of “best practice” alternative access solutions. For example – virtual consultations, automatic prescription renewals, etc. This is one area, among many, where the European Commission can support the Member States with the involvement of patient organizations. Digitalization needs to be integrated as part of national and European strategies to tackle health inequalities and avoid creating a new digital divide. As a member of the Commission’s eHealth Stakeholder Group 2019-2022, EPF will aim to ensure that the potential of digitalization is harnessed for the benefit of patients.

The digital-first approach is inevitable due to medical workforce shortages and increasing demand for medical services. As a result, the first contact with primary health care will increasingly be through digital and online tools. What is the sustainable balance between care delivered by humans and care provided by artificial intelligence systems?

Reports and studies highlight several key areas where AI may possibly have a direct impact on the patient: self-care, prevention and wellness, triage and early diagnosis, diagnostics, clinical decision. First and foremost, patients must be fully informed about the functionality, consequences, and possible consequences of AI incorporation in their healthcare pathways. There are risks of limiting human autonomy. For example, if AI were to make a calculation on risk or restrict a patient’s right to free, fully informed choice of treatment. AI must be seen as a support tool to improve care delivered by healthcare professionals (HCPs), not as a replacement. AI also depends on the availability of very large amounts of data. If the data are not enough, this limits the potential of AI to be useful. AI systems should focus on collecting data and extrapolating the relevant one for purpose. This should simplify early diagnostics processes, prevention, and optimal care. The subsequent phase should lead to personalized medicine. Lastly, lack of skills and digital health literacy for both patients and HCPs can also limit the potential of AI in health and create potential dangers. Empowering people by enhancing skills and literacy is a precondition to make the most out of AI-based innovation.

What are EPF’s expectations for digital transformation in health care?

We are curious and keen to co-design the next phase. Above all, we expect to see a responsible approach when it comes to data handling and management. For EPF, patients need to be in better control of their data, while consent mechanisms and data protection rights must be clearer and fit-for-purpose. Health literacy and patients’ empowerment are crucial elements to fully realize the digital transformation in healthcare in Europe. In the meantime, our virtual EPF Congress 2021 from 26-29 October will provide a greater and genuine understanding of the importance and added value of patient partnerships in the digital transformation of healthcare. We invite you to join us to explore patient-led innovation in the areas of health data, digital health services, AI, crossborder healthcare, and design. 