Promoting NGO transparency

NEWS
 
European patients’ organisations adopt a new Code of Practice between patient organisations and the healthcare industry
 
I have been asked by a drug developer to comment on one of their products to treat my disease. Should I accept? I have been invited to speak at a company event. What should I ask before accepting? My patient group is participating in a disease awareness campaign organised by a well-known drug manufacturer, what terms and conditions should I discuss with them beforehand? These are the type of questions the Code of Practice between patient organisations and the healthcare industry seeks to address. The document has been endorsed by EURORDIS and the following 15 European-wide patients’ organisations:
 

• International Alliance of Patients’ Organizations (IAPO)
• European Patients’ Forum (EPF)
• European Cancer Patient Coalition (ECPC)
• International Patient Organisation for Primary Immunodeficiencies (IPOPI)
• European Federation of Neurological Associations (EFNA)
• European AIDS Treatment Group (EATG)
• GAT – Portugal
• RETT Syndrome
• Myeloma Euronet
• Alzheimer Europe (AE)
• International Diabetes Federation - European Region (IDF)
• Lupus Europe
• European Men's Health Forum (EMHF)
• Ovacome UK
• The European Institute of Women’s Health

 
“Rare disease patient organisations have an interest in interacting with the healthcare industry, especially pharmaceutical and biotech companies. At the same time they need to secure their credibility by remaining independent and transparent when engaging with them,” argues François Houÿez, Health Policy Director at EURORDIS and member of the drafting group. “For this reason, EURORDIS and a core group of six other patient representatives, all members of the Patients' and Consumers' Working Party (PCWP) at the European Medicines Agency (EMEA), have developed a Code of Practice to guide patient organisations in their dealings with the healthcare industry, in order to avoid common pitfalls and to work with them in a constructive manner.” 
 
The Code of Practice is the result of year-long process of careful deliberation and in-depth consultation with their membership and a wider circle of patient groups. It is designed as a practical guide with recommendations on what to do and what not to do in particular situations.
 
“These are all situations that most of us have encountered in our daily interactions with commercial companies, especially drug manufacturers. The document has been designed to give practical answers to questions that most patient representatives have been faced with at some point in their work,’ explains David Haerry, member of the drafting group for the European AIDS Treatment Group (EATG). ‘We wanted to make others benefit from our experience. However this is a work in progress. We invite patient organisations to adhere to the recommendations and to develop their own guidelines based on these principles.”
 
At a time when patient organisations are under increasing scrutiny by healthcare authorities, the media and the public, it is important to adhere to the same set of principles in order to make relations between donors and recipients transparent. This is especially important for patient organisations at national and European level whose mission is to ensure that the healthcare system responds to patients’ needs and demands.
 
“More and more national and European patient organisations are called upon to defend the patient’s interest in the effective, efficient and equitable use of healthcare resources. At the same time, Europe’s complex healthcare systems benefit from empowered patients to determine the best use of funds. Patient organisations need to engage with a wide range of stakeholders: health professionals, health policy makers and politicians, and the commercial healthcare sector. Funding resources for such activity is very difficult to find. Ideally it should be balanced from different sources, however, in reality, some patient organisations have to rely on the healthcare industry for support,” argues Hildrun Sundseth, member of the drafting group for the European Cancer Patient Coalition (ECPC). “This is why these guidelines are critical to enable patient groups to participate freely in the debate about good quality healthcare, while safeguarding their independence.”
 
The Code of Practice also tackles the difficult question of funding diversification. Patient groups would like to be able to carry out their work with a variety of resources, in order to avoid overdependence on a single donor. However, the Code of Practice is ruled by a principle of reality that recognises this might be difficult or impossible for certain categories of patient groups.
 
‘Unlike HIV AIDS, some other disease-specific patient groups have the added difficulty of dealing with one or few companies developing a single drug or an orphan drug, so it is hard to diversify funding, but at least by following these guidelines, patient organisations can impose their own terms and conditions on a single donor and build a sustainable and positive relationship with industry,” explains David Haerry of EATG.
 
The Code of Practice is part of a larger effort by EURORDIS to promote transparency about financial support of patient organisations by the healthcare industry. Beginning with its Position Paper on NGO Transparency in 2005, and lately with the latest revision of the EURORDIS Policy on Financial Support by Commercial Companies in November 2009, EURORDIS has been at the forefront of transparency in relations with industry, and has encouraged its members to follow this example. 
 
“EURORDIS’ contribution to the Code of Practice was useful because of the extensive experience we have of patient and industry relations. We think it is important that patient groups having responsibilities at European level now share a common base of policy and practices,” says Yann Le Cam, CEO of EURORDIS. “Still, we are well aware that this Code of Practice is a work in progress, a first reference, which may be revised in the future, so as to take into account feedback from all stakeholders and the experience gained. The exchange on our practices will be as important as the Code itself.”
 
The Code of Practice, as well as information about the patient groups involved in drafting it, and the organisations that have endorsed it so far, can be found at http://www.ecpc-online.org/advocacy-toolbox/code-of-practice.html
 
If you would like to endorse the Code of Practice between patient organisations and the healthcare industry please contact François Houÿez at francois.houyez@eurordis.org

Author: Paloma Tejada
Photo credits:  © EURORDIS & © iStockphoto LP 2009