October 2013

Consult patients on the design of health care systems

Patients who have the experience of living with chronic disease become experts in dealing with their conditions and surrounding issues. Tapping into this expertise will improve service design, reduce waste and contribute to the sustainability of health care systems, says Nicola Bedlington, Executive Director of the European Patients’ Forum

It seems self-evident: health care systems exist to meet the needs of patients. From this it ought to follow that patients are at the centre of any discussion of how health care services are organised and operate.

But despite much talk about encouraging patients to become more assertive in managing their own health, the prevailing view of patients as passive recipients means they are rarely supported to do that.

“If you consult and involve patients as end users, the likelihood is that rather than waste resources, you will design more effective and more sustainable services. Patients are not cost drivers, they are part of the solution,” says Nicola Bedlington, Executive Director of the European Patients’ Forum. The Forum brings together 62 national and European-level patients’ organisations to promote the involvement of patients and ensure everyone with a chronic or lifelong condition is provided with equitable access to high quality health and social care. A key pillar in EPF’s work is addressing health inequalities and promoting equity and access and EPF sees this Conference as pivotal in moving forward on these issues.

The shift from passive to empowered may be as challenging to patients as it is to providers, and not every patient will want to be engaged in this way. But there should be the opportunity and support required if they do,” Bedlington says.

Medics may have clinical expertise in chronic diseases, but patients are “experts by experience” notes Bedlington. They live with the condition, manage it, learn how to cope with exacerbations, and how and where to access care when they need it.

The rise of the empowered patient

The availability of medical information on the Internet has, in part, contributed to the phenomenon of the empowered patient. Some clinicians have felt challenged by this, but it highlights how providing the means for patients to become health literate can foster a different type of interchange between patients and doctors. “You can have a dialogue, not a monologue, and this prepares the way for changing processes and service delivery,” says Bedlington.

There is evidence that listening to patients’ preferences and involving them in decision-making leads to better outcomes – and significantly – to lower costs. However, to date there has been little attempt to systematically capture these benefits.

True empowerment and involvement requires more than that patients scour medical websites. The quality of information should be monitored, there should be systems in place to collect feedback from patients on their experiences and to factor this into service design and delivery, and patients’ rights should be explicit.

But more than this, health professionals need training in communicating with patients. “Specific strategies are required,” Bedlington says. “In addition to improving health literacy, health care professionals need new skills and competencies, and the commitment to patient involvement has to be embedded into the way health systems are run.”

Advancing patient involvement

The European Patients’ Forum is actively driving this agenda, both through advocacy and in practical projects. An example is the Forum’s role in the European Patients’ Academy on Therapeutic Innovation (EUPATI), which is part of the European Union’s €2 billion Innovative Medicines Initiative (IMI).

The patient-led Academy is developing educational material, training courses and a public database to enhance the knowledge of  patients and citizens about the process of developing new medicines. Alongside patient involvement in drug development this will include information on how clinical trials are designed and conducted, and consideration of the safety and risk benefit assessments made before testing drugs in patients.

“Providing the right information to patients about drug design will facilitate their involvement,” says Bedlington. “Other players need to be engaged too.”

Another example is the work that the European Patients’ Forum is doing to ensure patients’ opinions are factored into the Health Technology Assessments that are increasingly being used to judge the value of newly-approved drugs and devices, to decide if they will be reimbursed.

Whilst Health Technology Assessment agencies express willingness to involve patients and carers, their – necessarily subjective – testimonies must somehow be factored into the file of objective data relating to the product being assessed. “There is a lack of clear methodology,” Bedlington says. “Patients need the opportunity to express their experience and expertise in a way that is compelling; there needs to be training and support.”

The message to delegates at the conference: Empowering patients should be put at the centre of efforts to ensure health care systems are inclusive and sustainable. “Empowered patients are not cost drivers. On the contrary, when patients are genuinely involved and their preferences are listened to and acted on, the result is better health outcomes, more engaged patients and lower costs,” Bedlington concludes.