In the past decade there have been many influences on the way we deliver healthcare. One of the most important transformations has been the way patients and carers are engaged in decisions about healthcare. The acceptance that patients, particularly those with long-term conditions, are experts in their own disease has been at the heart of these changes. Increasingly this experience and insight is being harnessed in healthcare, policy and research in order to ensure goals that are responsive to the needs of patients, leading to better outcomes and improvements in health and wellbeing. People are being encouraged to get involved in a structured and effective way in order to have an input in the future of their condition.
So what is the role of a patient organisation in this climate? A patient organisation is defined by the European Medicines Agency as ‘a not-for-profit organisation which is patient focused, and whereby patients and/or carers represent a majority of members in governing bodies’.
This chapter looks at patient organisations – their roles and how they have evolved, and the impact that they have on healthcare. Examples of these activities will be provided from a network of pan-European and national respiratory patient organisations.
The European Lung Foundation (ELF) was founded by the European Respiratory Society (ERS) in 2000. Its aim is to bring together patients, the public and respiratory professionals to positively influence respiratory health. ELF works to communicate and translate the work of the ERS to those outside the respiratory profession. However, more importantly in the context of this chapter, ELF works to ensure that patients and patient organisations have the opportunity to influence respiratory research, guidelines and ultimately care.
In June 2011, ELF carried out a Europe-wide survey to identify respiratory-oriented patient organisations. The initial search was carried out in English, as was the online survey. A total of 164 organisations were identified and 88 (54%) responded to the survey. The results obtained will be considered here in relation to the prevalence of lung disease across Europe.
Finally, this chapter will look to the future to see what challenges patient organisations face and how collaborating with professional organisations and speaking with one voice is vital to the future of lung health. The views and opinions of European respiratory patient organisations have been invited and incorporated.