IDEA LAB

UNLOCKING THE POWER OF PATIENTS: AN INTERVIEW WITH NICOLA BEDLINGTON

European Steering Group member Nicola Bedlington is the Secretary-General of the European Patients Forum (EPF). She sat down with us to talk to us about the different ways the EPF is working to increase patient empowerment across the EU and tells us why empowering patients will make healthcare safer, more efficient and more sustainable.

IDEA LAB

UNLOCKING THE POWER OF PATIENTS: AN INTERVIEW WITH NICOLA BEDLINGTON

European Steering Group member Nicola Bedlington is the Secretary-General of the European Patients Forum (EPF). She sat down with us to talk to us about the different ways the EPF is working to increase patient empowerment across the EU and tells us why empowering patients will make healthcare safer, more efficient and more sustainable.

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.

 

Nicola Bedlington

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.

Do you see a shift towards a better understanding of the expertise that patients bring to the table?
NB: I think there’s an important wind of change and a better understanding of how important the patients’ perspectives are.

 

 

Take the issue of waste in healthcare systems. The recent OECD report on healthcare waste highlighted that waste constitutes 20% of healthcare expenditure, which is massive, in the billions of euros. From our perspective, patients can really help tackle the waste issue. They’re fully aware of where there are redundancies in the system. Their voices are really important to help identify waste, inefficiencies and find better ways to do things without compromising quality or safety.

 

 

What else is important to know about patient empowerment?
NB: I think it’s important to highlight that patient empowerment is a process. A patient doesn’t wake up one morning empowered. There can be different degrees of empowerment in different contexts. Patient empowerment can depend on an individual’s health, emotional well-being and support systems and a patient’s level of empowerment can vary from day to day. It’s a spectrum, and it’s not something that can be imposed by others.

Download the eu whitepaper