The Case for National Coalitions of Patient Organisations: Louder and Stronger Together
©EPF
At the beginning of the year, EPF published its latest toolkit, a step-by-step guide on building national coalitions of patient organisations. But why is it important for local and regional patient organisations to organise and speak with one voice at national level? And what does this mean for the other stakeholders?
A national coalition of patient organisations is an umbrella organisation grouping national or regional patient organisations representing individual chronic conditions (Alzheimer’s diabetes, multiple sclerosis…) or groupings of conditions (rare diseases, cancers, mental health conditions, etc…). By coming together, these organisations create an umbrella that represents the collective interests of all patients in one country.
Why national coalitions?
National coalitions of patient organisations play a crucial role in a national context: they are the best placed to monitor, understand and react to as well as to actively influence the national health policies of their respective countries. As such, they have a great political value, for the patient community of the targeted countries but also for other stakeholders (decision-makers, health professionals’ groups, private companies and their trade associations, or insurers). They provide a single point of contact for external stakeholders, synthetizing and channelling the claims and positions of patients in one given country. Moreover, for international stakeholders such as EPF, they are essential partners in cascading messages from and to the national and regional levels.
Addressing the gap
Yet, if in some countries there has been an organisation representing the voice of patients beyond diseases for a long time, in some countries, such as Portugal or the Czech Republic, there is still no national coalition of patient organisations.
But things are moving forward, and the realisation of the added value of a national interlocutor is pushing stakeholders to act: on 7th June, MEP Katerina Konečná (GUE/NGL, Czech Republic) brought a large number of Czech patient organisations to the European Parliament, inviting them to network with their peers from other countries, and to take stock of the potential of cooperation within the country and across Europe.
The same week, the Centre for Social Studies from Coimbra University brought around 20 Portuguese patient organisations together for a capacity-building seminar looking at the issue of civil society participation in health policies. The question of working together and towards the constitution of a national organisation was high on the agenda.
“Beyond increased representativeness, a national coalition can ensure a continuous presence of patient-related issues in health and social policies and programmes”, commented Camille Bullot from the European Patients Forum, who represented EPF at the meeting. “It also provides a forum for generating collaborative responses, and broadens the breadth of issues usually considered by each individual organisation. As such, it expands the horizons of the patient community, and enables them to see the big picture.”
For our part, and to respond to this gap, EPF has recently developed and published a toolkit with the purpose of supporting the constitution of national coalitions. The toolkit is available for download here.