Informed patient

Future of healthcare in Europe needs more involvement of citizens in their health and healthcare. This, in turn, requires reliable and high-quality health-related information for patients and citizens.

The term, "Informed Patient", presumes that people with illnesses, patients, need appropriate information in order to be properly involved in their healthcare, to know how to seek care, decide on the best treatment with care professionals and to follow through the agreed treatment. 

Patients increasingly want to be in charge of their own health care and treatment decisions. They are asking for more information both on health issues in general and specific information (relating to, for example, prescription medicine) so that they are able to make informed decisions. This additional information is intended to complement the advice provided by health professionals. 

The EU has recognised the need for more information on health and is supporting this process in a number of ways. Firstly, through the review of EU's pharmaceutical legislation, the new entering into force in November 2005. The G10 Medicines Group (see EURACTIV, 1 March 2002) issued a report in May 2002 with a 14-point list of recommendations. Point number 10 covers the issue of "information to patients". It stipulates that "the restriction on advertising of prescription medicines to the general public should continue", but that "there should be no restrictions on advertising of non-prescription medicines, which are not reimbursed".

The Commission's 2004 communication on patient mobility underlines a need to improve the information available to patients on treatment options available in other member states and the rules governing the payment for such treatments by one's national health insurer. The Commission's action plan for eHealth (April 2004) states "accelerating beneficial implementation (information on health education and disease prevention etc.) as one of its priority areas.

 A new High Level Pharmaceutical Forum, set up in 2006, follows up on the work of the G10, as a sort of implementation forum of the G10 results and recommendations. One of its three main issues is information to patients. With this regard, the Commission has set up a multi-stakeholder group with the objective of developing a future EU health information strategy. Three working groups are working, since early 2006, on non-statutory informationstatutory information and accessibility. The working groups prepare the annual meeting of the official Pharmaceutical Forum, consisting of the relevant ministers from the EU-25, MEPs and senior representatives from key stakeholder groups.

A number of stakeholder meetings have brought together the Commission, professional associations, patients and industry to discuss the 'informed patient'. A draft framework for action, presented by the Cambridge University, has been discussed in this context. These meetings have identified the following as the key issues for the debate:

  • plurality of information sources, such as doctors, pharmacists, media, family and especially the internet;
  • patients need both to be informed (one-way) and to be able to communicate (two-way) for example with an expert;
  • patients differ in their receptiveness to information;
  • health information vs. direct advertisement of prescription medicines;
  • compatibility of corporate interests wanting to maximise sales with public health interests of providing balanced information to patients;
  • changing patterns to healthcare: a move from a "doctor knows best" attitude to a more collaborative approach; 
  • patients' desire to have more health related information;
  • the need for ageing populations to have more active patient involvement;
  • the multitude of treatment options;
  • ethical issues in research;
  • patient organisations. 

In a July 2006 stakeholder meeting on the issue, a Commission representative said that the "doctor-patient dialogue is at the heart of the Commission policy on the information to patients". Otherwise, the Commission has two approaches to the issue. One the one hand, highly regulated information on medicines (information of labels and the patient information leaflet PIL). On the other hand, ad hoc health awareness campaigns on disease and life style related issues, for example. As the internet is playing an increasing role as a source of health information, the Commission launched an EU Health Portal in May 2006. 

A multimedia initiative entitled Health in Europe was launched by the Commission in February 2006. It aims to create a network of public broadcasters and other media across Europe with the view of fostering the exchange of reports, including television documentaries, radio broadcasts and press and internet articles on health issues.

The European Federation of Pharmaceutical Industries and Associations (EFPIA) recalls that the pharmaceutical industry in Europe strongly supports the increased provision of high quality medicines information and the concept of a health-competent and empowered citizen. "However, pharmaceutical companies who have a wealth of knowledge and information to share about health and medicines are today prevented from fully contributing to the European public's understanding of their products," said Scott Ratzan, Chairman of EFPIA's 'The Informed Patient' Task Force. 

"Improved quality healthcare information allows for better prevention, early diagnosis, better treatment of disease as well as improved adherence" says Thomas Cueni, Chairman of the EFPIA Economic and Social Policy Committee. 

The Pharmaceutical Group of the European Union (PGEU) highlights pharmacists' role as a provider of information and a link for the citizens between the prescribers and medicines. According to a Eurobarometer survey (2003), pharmacists enjoy a "very high level of trust from the public". Pharmacists expect a good set of authorised information on medicines to be made available.

European Cancer Patient Coalition, reminds that different patient needs must be taken into account and that information needs to be simple and understandable to patients. "At the same time, there should be no single person or organization acting as a gatekeeper of health information." 

European Patients' Forum  says that an informed patient accesses health care much more efficiently. "Patients need to move from ignorance to information, from information to education, from education to empowerment and thanks to empowerment to their genuine involvement in health. Only this process can lead to a genually patient centred health care," explains Rodney Elgie from the European Patients' Forum. 

"In order to meet all EU citizens’ expectation to be and stay healthy all their lives, prevention is key" says the Standing Committee of European Doctors (CPME). "MEPs will have to consider focusing on life style issues and especially tobacco control, access to healthy nutrition and environmental questions. This is especially important for children and the elderly. Key issues like obesity, but also paediatric medicines and elderly care will have to be addressed. To ensure the patient/doctor partnership, the informed patient and health information are of the utmost importance," said the Secretary General of CPME Lisette Tiddens-Engwirda.

German government representative said that he would like the information to patient as an issue to be broadened to cover more the health policy as such and highlighted the importance of talking about healthy lifestyles. "One should talk first about informing people about healthy life styles and only after about medicines and treatments," he said.

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