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18th October 2016

Giving patients the voice they deserve

Getting diagnosed with a life-changing medical condition can be confusing, but fortunately there are people who can help.

You and your family may not know where to turn for accurate information about your newly diagnosed condition, or about making sure you get the best treatments and emotional support. Enter the patient advocacy organisation.

Across Europe, we’re lucky to have an expansive network of national groups created for the sole purpose of supporting people with all types of chronic health issues ranging from asthma to multiple sclerosis to cancer to Parkinson’s disease. But sometimes to do the best job for the patients they represent, the organisations themselves need a boost, too.

That’s the main role of the European Patients’ Forum (EPF), whose vision is that all patients with chronic and/or lifelong conditions in the EU should have access to high-quality, patient-centred equitable health and social care.

One way in which EPF assists patient organisations is through its Capacity Building Programme (CBP), which has been running for four years. Through various training modules, CBP coaches work with staff in national patient advocacy organisations across Europe to improve their effectiveness so that they can best meet patients’ needs.

Part of this is ensuring patients are able to contribute to discussions among the people who make decisions about their care, from healthcare professionals to policy makers.  To do this, organisations need to have a clear strategic plan as well as the necessary knowledge, skills and resources to execute that plan, explains Walter Atzori, EPF’s Director of Programmes and Operations.

For example, fundraising is a key element of any strategy and the CBP does training in this area. It teaches organisations to be more professional in the way they approach stakeholders that can help with funding. “There’s a remarkable change in mentality ‒ from fundraising for a specific project to fundraising against long-term goals and strategies ‒ and the stakeholders appreciate this,” notes Atzori.

One of the programme’s “graduates” is Yves Brand, who’s responsible for fundraising at the European Multiple Sclerosis Platform (EMSP), a member of EPF. “There was a day-long session on linking fundraising with communications that I found particularly useful,” he told This Is Medtech.

Young people are the future

Many patient advocacy groups are run by volunteers. They may be family members of someone who has a specific disease or even the patients themselves. Both Brand and Atzori point out that there’s a lot of potential for young people to become patient advocates, giving advocacy organisations the long-term sustainability they need. “Young people with MS are so active in this area,” says Brand. “They’re already setting up their own networks.”

Empowering young MS patients is a goal of the EMSP and Brand believes the CBP has helped his organisation to achieve some concrete, measureable outcomes. “We have some really meaningful, specific projects,” he comments. One of these is Believe and Achieve, a paid internship programme that helps people with MS access employment opportunities. “We also address the social aspects that young MS patients can face, like dealing with relationships,” he points out.

As for EPF, it’s open to tweaking the CBP based on feedback received. “We’re very pleased with what we’ve achieved, but we recognise that there’s always room to improve,” notes Atzori. To this end, the organisation soon plans to roll out some new features, like a summer school that’s focused on building youth leadership. “The idea is to have dedicated training for young people with chronic conditions on how to become patient leaders,” he says.

“As an umbrella organisation, we have a responsibility for supporting the patient movement in the long term. This gives them the tools they need.”

The CBP at a glance…

While patient organisations were originally set up to support people living with chronic conditions, their role has evolved over the last decades, with more and more organisations now doing quite a lot of advocacy work engaging with all sort of stakeholders ‒ at the same time maintaining a close link with their ‘grassroots’ through local patient groups.

This is where CBP comes in: as the role and expectations of patient groups are changing, new skills and competences are required to meet the growing demand for patient input and participation, e.g. in decision making, development of new treatments, services, etc. CBP has been designed to support patient organisations adjust to this fast changing environment, equipping them with the skills and knowledge they need to engage in such processes on an equal footing with other stakeholders.