Intro

To build trust for patients, I think it’s really important to involve patients in the design of digital healthcare systems.

How should patients be involved in the realization of a national health platform?

Patients should be involved in the realization of any national health platform. It is, first of all, a moral imperative. But it’s not just a moral imperative. It is also a business case for national health platforms that aim to deliver better health, to create those platforms with those who receive the healthcare. So, if you want to have good outcomes for patients, it’s important first to know what the outcomes patients want, and to build your health platforms around those needs. It is logical, and it’s also much more efficient.

How can digital platforms promote patient participation?

Digital health platforms have an enormous promise for patients because they can equalize and improve access to own health information. It can improve the patient’s understanding of their own health journey, from before becoming a patient to throughout their care. And I think that’s really important because it normalizes the participation of the patient in their own care, and it facilitates the dialogue between caregivers and patients.

What is the aim of “The Patient Organisations’ Manifesto”?

In the whole concept of patient empowerment, patient involvement, patient engagement and patient design, the common element is the patient. “The Patient Organisations’ Manifesto” is a tool, a vision for the future that we as a patient community created together with our members and the wider stakeholders that we’re engaged with in a true co-creation way to say: “This is what we want the future to look like for patient organizations.” Healthcare can no longer be done without patients. Patient empowerment is a concept that brings literacy, but also inviting and giving the tools to patients to participate in their own care. Patient engagement is a communication with patients about things that concern them. Patient design is about co-creating health tools with patients and bringing that voice and incorporating it into how things are done. But the whole broader concept of patient involvement encompasses all of them as parts or enablers into a democratic principle of patient communities being active participants and co-deciders in the way healthcare systems deliver care for patients.