Patients’ organisations have become real players and health stakeholders at EU level, and this development looks set to continue, as reinforced recently by John Dalli, Commissioner-designate for Health and Consumer Policy (SANCO) in President Jose Manuel Barroso’s new Commission. Speaking in front of a three-hour hearing by the European Parliament’s Committee on the Environment, Public Health and Food Safety (ENVI) to consider his nomination to the Commission, he underlined the important and central role of patients and their organisations in health policy development and the acute need to develop mechanisms to strengthen and support patient groups.

Health care policy decisions directly affect the lives of patients, at whichever level they are made. It is therefore important for patients themselves to be actively involved in health policy development, in order to ensure that policies reflect their needs, requirements and preferences. This has long been the case at local, regional and national level but advocacy and interest representation at EU level is a relatively new phenomenon.

In the early days, EU lobbying was primarily a ‘company’ and high level diplomacy activity, and there were few EU-level civil society organisations. However, this situation changed dramatically in the early ‘80s, due to the increasing ‘power’ and transparency of the EU and its decision-making processes. In addition, the increasing level and range of EU activities in relation to health and social policies made it more relevant for patients’ organisations to be involved with these processes.

Large numbers of EU-wide organisations were established, representing a wide variety of different social groups and issues. National organisations of and for patients joined together to form representative entities which would be listened to by EU level policy makers, and could get actively involved in the development and implementation of health and care policies at EU level. These include the homeopathic and anthroposophic patient groups, such as the European Federation of Homeopathic Patients' Associations (EFPHA) and the European Federation of Patients’ Association for Anthroposophic Medicine (EFPAM).

Today there are some 15,000 lobbyists active in Brussels, distributed as follows: European trade federations (32%), consultants (20%), companies (13%), civil society groups, including patient and health groups (11%), national associations (10%), regional representations (6%), international organisations (5%) and think tanks.

However the particular growth of patients’ organisations and the increasing prominence of their profile have also been due to a further combination of two parallel developments.

Firstly, patients themselves have become increasingly organised and vocal. Over the last decade, several EU-wide disease-specific and general public health advocacy organisations have been created. From the beginning, the disease-specific organisations were relatively competitive, each making sure that they obtained their share of the scarce resources available to EU level patient groups. In reality, this competition meant that the influence of these groups remained limited, as opposed to some of the more general, consumer-oriented public health advocacy groups. The latter, who addressed health policy in general, were quite effective in getting and keeping the attention of the policy makers.

It soon became clear that a united patient voice was needed, and the European Patients’ Forum (EPF) was launched: a European umbrella organisation for European-wide patient organisations representing various disease areas and therapeutic approaches. This challenged the organisations to focus on the elements they had in common rather than their own specific issues. However, within about five years the EPF has become a powerful representative and voice of patients. EPF members continue to campaign on their own specific issues, but where common ground can be found (e.g. initiatives on information to patients, decisions on clinical trials), the cooperation has proved very useful.

At the same time, policy makers have become acutely aware of the gap between the EU and civil society (as demonstrated by several Member States’ ‘no’ votes on the Lisbon Treaty). Conscious efforts are being made to better reach and involve EU citizens and to actively engage representatives of civil society in a number of policy development and initiatives. There are an increasing number of EU-wide public consultations, whereby the European Commission actively seeks the views of the citizens, and the creation of advisory and discussion platforms of which representative organisations can become member (e.g. the Health Policy Forum ). Moreover, the EU provides funds to a relatively large number of civil society organisations for their core work and actively provides space for them in policy deliberations. In other words, the need to stimulate civil dialogue and to include the voice of the citizens in the debate is explicitly recognised.

As a result, patients and their rights have benefited from a more prominent place in EU policy development, demonstrated by the launch in 2009 by European Commission of its campaign, ‘Europe for Patients’, that brings together different policy initiatives that share a common goal - better health care for all in Europe.

Patient organisations and pharmaceutical companies

As patient organisations became more powerful players, the pharmaceutical industry increasingly saw the need to build relations and strong partnerships with these groups. It rapidly became essential in order to remain a credible player in the policy process. Firstly, patients are the ultimate target group for the companies’ products. Secondly, they are a credible and powerful ‘promotor’ of the reputation of a company and a credible stakeholder in the process to influence policy. And, with patient organisations needing funding for their activities, partnerships soon became a reality. This was not always viewed as positive. Public health advocacy organisations and other health stakeholders often accused patient groups of ‘being in the pocket of the industry’ as there was an overall lack of transparency in the relationship between the funding and what was expected in return – such organisations were quite successful in their efforts to discredit patient groups, especially with the European Parliament and European Commission.

Fortunately, this is now changing. Over the last few years, patient organisations have made it increasingly clear that they are not to be seen as an extension of the marketing arm of the individual companies that support them. Instead, they want to be seen and treated as equal partners. Many have a Code of Conduct in place to define the terms on which they will work with the pharmaceutical industry, and transparency is now often one of the main criteria in considering funding.

The opportunity is there for a stronger patient voice on homeopathy and anthroposophic medicine on behalf of the 100 million users of these therapies in the EU. It will be interesting to see how the new Commissioner will turn his forceful statements into even more powerful actions on behalf of patients.

Christine Marking
ECHAMP Public Affairs Consultant