Six Parallel Sessions

The patient community is a strong advocate for patient involvement in many aspects of healthcare such as service designing, research and development and HTA; this is because patients, as final users, are very much aware of what can be improved in healthcare systems.

Nevertheless, asserting that patient involvement is needed to pinpoint the “added therapeutic value” of new technologies and treatments, always triggers the question of its impact, if any. For many, the issue of measuring impact is raised frequently, as the facilitation of patient involvement comes with investments, setting up of programmes and infrastructures.

Health systems’ performance can be assessed by evaluating to what extent they deliver the outcomes and experiences that matter most to patients. This session takes a health systems perspective based on EPF’s work with patients on defining “quality” healthcare, and links to current initiatives on developing patient-centred healthcare quality indicators together with patients.

Patients are increasingly becoming not only research subjects but also co-researchers, and even drivers of research. Research with patients, driven by patients’ real-life unmet needs and priorities, can deliver high-value, sustainable solutions. This session will explore the opportunities of doing research “with” as well as “for” patients, looking at innovative examples from therapeutic research and development, but also at a wider context of health and the setting of research priorities together with patients. The session is developed in collaboration with BMJ.

This session will look at inspiring and educational case studies, exploring the process, principles, benefits and pitfalls of co-designing a healthcare service local with those who use it. You will have an opportunity to learn from the perspective of the patients and healthcare users, as well as professionals and healthcare managers.

Digitalisation in healthcare has the potential to transform patient-centred care. This session on digital health has two main objectives. On the one hand, we will explore the different ways in which “digital” can improve the care of patients (at a systemic, or individual level) and how this can be scaled up. At the same time, we will examine how patient involvement can be embedded in digital health as a driver for change, with the intention of harnessing digital technologies for the benefit of patients and society.

Our premise is that all developments should start from the needs of healthcare users and be co-created with users. This would ensure that technology actually facilitates participatory, person-centred healthcare and leads to better outcomes for patients and better value for society.

Patients and patient organisations play a key role in advocating for safer care, which should be promoted through empowerment and participation at all levels. Research suggests that “lay expertise” could be the backbone of patient safety, including in acute illness, but there are barriers – such as patients’ concerns not being taken seriously, persistent hierarchical culture, and the disempowering nature of many healthcare settings. This session will build on previous work done by EPF to identify ways forward towards achieving a patient safety culture where patients’ experiences are valued, and their participation welcomed.