Interview with Gunta Anca: Put educated patients at the heart of people-centred health systems

23rd June 2015

As a leading disability rights campaigner and patient advocate, Gunta Anca is determined to make the slogan ‘Nothing about us, without us’ come to life. Key to this is to educate both patients and healthcare professionals, she says

The availability of medical information on the Internet has undoubtedly shifted the status quo between citizens and doctors, but much more work and support is needed to truly empower patients, engage them in the design and delivery of services, and give them with the means to shape their own care.

“If you ask me if I’ve seen much progress in terms of patient empowerment, I would say yes and no. The Internet makes it possible to get information. But you can’t make your own decisions on that basis, you need personal medical advice,” says Gunta Anca, Chair of the Latvian disability rights organisation, SUSTENTO and Vice President of the European Disability Rights Forum.

Health literacy should be recognised as a cornerstone of people-centred health delivery. “You shouldn’t do anything on behalf of patients without asking them,” Ms Anca says. When patients are health literate it changes the relationship between patients and doctors. Rather than listening to a monologue, patients can engage in dialogue, and feedback from patients on their experiences can be factored into how services are shaped and delivered.

A prime example is Health Technology Assessment (HTA), where patients’ opinions should be factored into deliberations on the value of innovative drugs and treatments. For patients’ views to be weighed in HTA decision-making, patients, their families and carers must be enabled to describe their experiences and express their preferences in a meaningful way. “You have got to have educated patients – not just to talk about their individual needs, but also the needs of patients as a whole. Patients should be expert in the [relevant] field,” Ms Anca says.

Empowered patients challenge providers

It remains the case that many in the medical profession feel challenged by patients who are in possession of information about treatment options and have opinions about their care. This is despite evidence that listening to patient preferences and involving them in decision-making leads to better outcomes.

“That’s why it is also important to talk about professional empowerment,” Ms Anca says. “There are doctors who object to these changes, or who do have the experience to know how to respond. This requires education too,”

Health professionals need training in communicating with patients, and a commitment to patient involvement has to be embedded in the way health systems are run. “There is a need to change the culture, the training and the attitudes; you can’t do this piecemeal,” says Ms Anca. “This gets to the heart of what we mean by patient-centred approach. It’s not up to the doctor to dictate what the treatment is, patients must be given a degree of autonomy in decision-making.”

Digital technologies and people-centred health care

As a leading campaigner for disability rights, Ms Anca sees digital technologies as an important promotor of people-centred health systems. “The eHealth event held in Riga as part of Latvia’s EU Presidency, was particularly important in highlighting the value of digital technologies in healthcare,” she says. “It showed how ehealth can be used to bring health care closer to the people and be easier and cheaper for the providers.”

Sharing experiences of applying digital technologies in different Member States is particularly potent, Ms Anca believes. “The more people know about these things – and see it’s not theoretical any more – because your neighbours are doing it – then the more it makes you think, I can do it too.” The result will be to create momentum around the use of digital technologies to underpin a people-centred approach.

Cross-border, patient-centred care

Another area where the EU can take a role in shaping people-centred healthcare is in further promoting the cross border directive on healthcare, Ms Anca believes. “Mobility is very important, especially for smaller Member States. In Latvia for example, there are no liver transplant specialists.” While the directive means it is possible to go elsewhere, people have to pay upfront and get reimbursed from their national health systems afterwards. “It costs too much and this is why the cross border directive is not working very well,” Ms Anca says.

Making it easier to access healthcare in other Member States would support the development of cross-border centres with concentrations of expertise. “This would make it cheaper for all the payers and at the same time improve access, quality of care and outcomes for patients,” Ms Anca noted.