What kind of and how much health information do patients need?

Representatives of the Commission, academia, industry, pharmacies and NGOs gathered on 16 October to discuss possible EU policy actions to improve the way health information is communicated to patients.

A number of key issues were identified by the stakeholders during the meeting:

  • 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;
  • The plethora of information sources, especially on the Internet;
  • Health information vs. direct advertisement of prescription medicines;
  • Ethical issues in research;
  • Patient organisations.

Professor Don E. Detmer presented the results of a research project on "informed patients" conducted by the University of Cambridge. The project found that well-informed patients are less anxious, start their treatment earlier and follow their doctors' advice more closely. Additionally, healthcare costs drop in the case of better informed patients as they are capable of self-management and a more efficient use of resources. According to the findings of this research, the EU's future information framework should assure the quality of information, support decision-making, improve care management, while accommodating new information and communications technologies. Once this framework is created, implementation should be ensured at all levels, standards should be set to ensure the quality of information while patient health education and continued professional development should be supported. 

Representing DG Research, Dr Octavi Quintana Trias gave an overview of the ethical aspects of health information in biomedical research. The speaker explained that in health care, a tacit agreement is often sufficient, which is not the case in biomedical research, when the patient has to give his/her "express and written consent". Here, the patients concerned must understand the objectives of the research, risks and nature of the treatment, as well as their right to refuse and withdraw at any time during the research project. Patients are entitled to compensation where treatment results in harm coming to them. They must also agree to the potential uses of the results, including commercial use and patenting.

Dr Philippe Brunet, Head of Unit in DG Enterprise lamented the decision by the European Parliament and Council of Ministers not to support the test case to allow information on drugs designed to cure three diseases (see more under "background"). In his view, more (legislative) effort should be made to control the content of mushrooming health websites.

Dirk Broeckx (PGEU) provided the pharmacists' contribution to the debate. As a link for the citizens between the prescribers and medicines, pharmacists have a crucial role in the provision of health information to patients. 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. PGEU thus welcomes:

  • the set of changes proposed by the pharma review to the Package Insert Leaflet;
  • the EMEA database;
  • and the forthcoming EU Health Portal.

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

The EU recognises the need for more information on health and is supporting this process in a number of ways. Firstly, through the review of the EU's pharmaceutical legislation. In the framework of the review, the Commission proposed a pilot project to allow information on new drugs to treat diseases such as AIDS, asthma and diabetes. However, this proposal was rejected by both the European Parliament (see also EURACTIV, 24 October 2002) and the Council (see also EURACTIV, 4 June 2003) in its first reading.

The G10 Medicines Group (see also 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". 

Key stakeholders gathered on 16 October 2003 to discuss the way forward for patient information in Europe at a round table hosted by the Madariaga Foundation.

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