Will Brexit affect European patient advocacy groups?

It has been four months since Britain’s referendum vote to leave the European Union, and we are still not much closer to knowing the EU’s future relationship with the UK. Article 50 negotiations are due to start in early 2017, and there is still time for a lot to happen before their expected completion in 2019. One of the many sectors that may be affected is patient advocacy, and the key role of British groups in this area means the next two years will be a time of great uncertainty.

Patient advocacy groups are primarily a late 20th century phenomenon; groups of citizens coming together to demand change from government, to express needs that large bureaucratic European health systems are not satisfying. Patient advocacy groups perform many different functions beyond lobbying governments for access to treatment. They also support individual patients, communicate information on the latest scientific and medical knowledge, and raise money for research.

At European level, many patient advocacy groups have come together to form pan-European organisations that have been instrumental in changing EU legislation. Simultaneously, building connections across the continent has allowed them to learn from each other and strengthen their activities domestically.

British patient advocacy groups have often been the strongest in such pan-European organisations. The tradition of charitable giving and the strong ‘third-sector’ in the UK has often led British organisations to lead and push forward movements at EU-level, in contrast to the antipathy with which some British politicians treat Brussels. Speaking native English and being only a two-hour journey from London to Brussels no doubt helps, though a British-sense of pragmatism and impulse to ‘get things done’ perhaps contributes too. The professionalisation and advocacy successes achieved by patient advocacy groups over the past decade may be partly attributable to the contributions of British organisations.

The question now is what happens to this influence when the UK leaves the European Union? Likewise, what will happen to pan-European patient advocacy groups if they lose their British members?

One of the main attractions of working in Brussels on a pan-European basis is the relevance of the EU to the health system and policy environment in the UK. If Brexit implies a break from cooperation on health policy and the EU regulatory system, it would be natural to expect British organisations to cut their commitment to EU affairs. The absence of British organisations from pan-European patient advocacy groups does not naturally follow, though a shift in attitude and influence should be a worry for anyone interested in the sector.

The final settlement of the Brexit negotiations remains a long way off, though it is difficult to imagine a complete regulatory disentanglement of the UK from the EU, and cross-border cooperation on issues such as communicable diseases, data sharing and R&D seems likely to continue. Will the voice of British patient advocacy groups still be heard? The lack of British MEPs in the European Parliament and British ministers and civil servants in the Council will make it a challenge, though many British organisations currently retain an audience far wider than just other Brits.

British patient advocacy groups have helped instil a drive into the pan-European groups they are members of, and their superior resources often make their impact within such organisations felt. The growth of the patient advocacy movement and the volume of the patient’s voice in Brussels will hopefully not be lost with the absence of the UK as a full EU member.

Burson-Marsteller have worked with patient advocacy groups over the last 15 years, and provide trainings and projects that have helped patient advocacy groups achieve their goals. For more information, please contact sylwia.staszak@bm.com

Words Sam Kynman (Burson-Marsteller)
Photos CC/Flickr Thijs ter Haar

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