The role of patient organisations
Patient organisations have traditionally provided a supporting role for patients, but their activities are constantly developing and evolving. Here, the evolution of patient organisations and their activities in three fields is discussed, and specific examples of activities are given from respiratory patient organisations in Europe.
1. Supporting and advising
Historically, the sharing of patients’ experiences of their own disease was the key reason for the establishment of patient organisations. One of the first organisations to provide support was Alcoholics Anonymous, which was set up in 1937 in the USA. Such organisations offered secure and supportive environments to share experiences and advice. Decades later, this remains a crucial function of the majority of patient organisations. However, the means by which this support and advice is shared has changed.
Many patient organisations still provide face-to-face opportunities to meet and discuss. An example of this is the British Lung Foundation (BLF) Breathe Easy groups, which have been set up in various regions of the UK (www.lunguk.org/supporting-you/breathe-easy/breatheeasygroupsacrosstheuk). However, much interaction now takes place online, through blogs, internet forums and websites. An example is the Pulmonary Hypertension Association (PHA) Europe web tool ‘Time Matters’ (www.phtimematters.org), which aims to give patients a voice. Here, patients and carers can post their hopes for the short-, medium- and long-term future and share their fears with others. A number of patient organisations also provide phone services, nursing support and even experts in indoor air quality for their members and the public.
Patient organisations help people to understand their condition(s). Many still provide comprehensive and clear information on paper, but this is being supplemented with websites, videos and social media. The Asthma Society of Ireland provides an asthma checklist describing what people with asthma should expect from a visit to their general practitioner, and has published inhaler technique videos (www. asthmasociety.ie/inhaler). The Lovexair Foundation Spain has produced a documentary about COPD and α1-antitrypsin deficiency (www.lovexair.com/en/page5/page5.html) to educate people about the conditions.
The aim of this project was to identify patients’ needs for partnership in the context of clinical trials. Moreover, the project led to a well-organised and sustainable communication platform and guidelines, to enable mutually beneficial interactions between patients and clinical trial professionals.
The objective of the VALUE+ project was to exchange information, experiences and good practice regarding the meaningful involvement of patients and patient organisations in European Union-supported health projects at European and national level.
2. Making change happen
Many organisations have developed an advocacy role, and represent the collective identity of their members in the public and political domain. Patient advocacy groups fight for public recognition of their disease through awareness campaigns, the speed and efficiency of which have been revolutionised by using websites, e-mail and social media. The political impact of patient organisations has also grown as they strive for action and change, and increasingly patient organisation representatives are included in official bodies advising on health policy and care decisions.
For World Asthma Day 2011, Asthma UK launched ‘Get it off your Chest’, an awareness campaign using an online map. Over 1800 people with asthma shared their stories. Asthma UK presented the stories to UK Members of Parliament during a reception, which enabled them to highlight the seriousness of asthma. Nationally, many patient organisations work with their governments and health services. In 2008, the French Federation of Associations of Patients with Respiratory Insufficiency or Handicap (FFAAIR) developed a charter for patients who receive care at home. Created by patients and for patients, it outlines the rights and responsibilities of home-care personnel and patients in order to guarantee effective and high-quality care. The French Minister of Health and 24 societies representing care providers have now signed this charter.
3. Providing the patient perspective
More recently, patient groups have become involved in scientific and therapeutic activism. The concept of the ‘expert patient’ or the ‘expert of experience’ has developed. The aim of the expert patient is to input into research and healthcare using his or her unique expertise – as someone who has first-hand experience of a disease. Although this concept is well accepted in many areas, the evidence to show the impact it can have is still evolving. Many patient organisations have developed processes and methodologies to ensure that their members are fully prepared to get involved in areas such as research and clinical trials, and ensure that patients are available to participate wherever needed. Several European Union-funded initiatives have also brought together patient organisations from across Europe to help others engage as experts in their own disease (see EU-funded initiatives).
Patient organisations are also playing an increasingly key role in research funding, facilitating more research and directing where money is spent. The Netherlands Lung Foundation (Long Fonds; www.longfonds.nl) started to involve patients in research and in research and health policy in 1997. In 2007, the Long Fonds established a dedicated advisory board, consisting of patients with respiratory diseases. This board helps to develop standards of care, care guidelines and translations of these guidelines into lay language, as well as establishing research priorities, developing criteria to evaluate research from the patient’s perspective, implementing research policies, evaluating research proposals in annual grant rounds, and monitoring ongoing research projects.
Public and patient involvement in European projects has become a key requirement when securing funding. A good example in the respiratory arena is a project called ‘Unbiased BIOmarkers in PREDiction of respiratory disease outcomes (UBIOPRED)’, a project in which ELF is a partner providing the means for public dissemination of information about the project (www.UBIOPRED.european-lung-foundation.org). Patients working with the Long Fonds and Asthma UK have played a key role in key stages of the UBIOPRED project: in the development and wording of the proposal itself, in the ethics committee and the safety monitoring board and on the content and tone of the website. The patients involved were also able to give their advice to the project as a whole when there were difficulties with the recruitment rate of subjects for the project.
Distribution of activities
What is clear from the ELF respiratory patient organisation survey is that most patient organisations today carry out a variety of roles. Indeed, the examples given only represent one activity of each of the organisations. Figure 1 shows the response of the surveyed patient organisations to the question of what activities they perform for and on behalf of patients. The data suggest that the majority carry out the traditional core activities of a patient organisation, including support and providing information, but that additional roles are growing and developing.