What is the mission of EPF?
Nicola Bedlington: EPF is an umbrella organisation, currently bringing together 74 European disease-specific organisations and national patient coalitions to address issues facing patients across the European Union. Patient empowerment is one major thematic pillar, because we believe it’s critical to ensure patient-centred, quality and sustainable health systems in the future.
We’ve done a lot of work on the theory behind patient empowerment through a study called EMPATHiE, which analysed the impact of patient empowerment on the management of chronic diseases.
The results identified three key tenets: first of all, the role of high-quality patient information and health literacy. The second tenet is the relationship patients have with their healthcare professionals, including the notion of shared decision-making. The third tenet is the importance of self-management.
If all of those dimensions are put in place appropriately, both in a policy environment and in the hands-on, day-to-day health environment, we believe they will lead to both quality and sustainability, which go hand-in-hand.
The EMPATHiE study led to a campaign on Patient Empowerment in 2015-2016. There were two important deliverables aside from the awareness that the campaign created. First of all, we created the Patient Charter, a list of ten principles linked to patient empowerment that can be used in a doctor’s surgery, by an individual patient working with his or her community and also in a policy environment. The other deliverable is a roadmap on what we want to achieve in the coming years, and what we need to move forward on both in at political level and in practice.
The campaign really helped increase understanding of the importance of patient empowerment, and you hear that much more in the political discourse both in Brussels but also at country level.
What’s the link between patient empowerment and patient access?
NB: Patient empowerment goes hand-in-hand with patient access. For more equitable access to health and social care across the EU, to tackle some of the major inequities in health, you need empowered patients and empowered patient organisations.
What are some other ways patient empowerment is changing the healthcare landscape?
NB: One piece that is quite interesting and relevant is the role of patients in the therapeutic innovation process. We’ve been doing a lot of work with EUPATI on therapeutic innovation. The idea is to bring patients into the process by focusing on the educational resources patients need to understand the therapeutic innovation process throughout the life cycle of medicines, from identifying unmet needs and defining priorities to the collection of real-world data. This enables patients to be much more engaged in the therapeutic innovation process using their own experiential knowledge as patients, which we believe will ultimately lead to better medicines and a better use of resources.
If patients can contribute their unique expertise and experience, then ultimately, their input will make a difference. For instance, the patient’s voice brings so much to the benefits/risks analyses, because their perception of benefit/risk will be very different from that of a healthcare professional or the regulator.