Parliament to press for patient ‘health literacy’

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New EU rules designed to improve medical information available to patients will fail unless levels of health literacy are improved across Europe, MEPs and health campaigners warn.

The European Parliament will vote on a draft report by Swedish MEP Christofer Fjellner later this year which will highlight the importance of providing information in a consumer-friendly format.

Fjellner is keen to reaffirm Europe's opposition to advertising prescription medicines and may allow member states to decide how best to provide quality information to the public.

In Sweden an industry-run service known as FASS is seen as an authoritative source of user-friendly information. However, other countries may prefer to ask medicine regulators to provide this kind of service.

Patients unable to handle medical information

At a debate on health literacy yesterday (23 June) hosted in the European Parliament with the support of MSD, health groups said the issue should be given prominence in the new directive and factored into all European health legislation.

The challenge of raising health literacy is currently being measured in an EU-funded survey, which is due to report initial results in October. Previous research undertaken at national level suggests that as few as one in five people fully understand all the information they receive from healthcare professionals.

Of those who do not understand what they are told, just 43% say they would ask for clarification if details are unclear. This, say campaigners, leads patients to take the wrong doses of medicines and undermines citizens' ability to make informed decisions about their health.

While low levels of adult literacy can be a barrier to grasping vital details about medicines, poor standards of numeracy can also cause problems, especially when it comes to understanding risks.

Literacy problem exacerbating health inequalities

Patient groups say raising health literacy will help empower patients and iron out inequalities across the EU – adult literacy rates tend to be higher in northern Europe than in southern and eastern states.

This has become a particularly pressing problem given the rise in chronic conditions such as diabetes, where patients are often expected to manage their own diseases.

There are also calls to have the definition of health literacy broadened to include food and other non-prescription health products. Campaigners want the scope of the Information to Patients Directive widened beyond its current focus on the heavily-regulated medicines sector.

While tackling literacy rates in schools and through adult education courses is part of the solution, health professionals are also coming under pressure to improve communication skills.

Academics and patient lobbies say medical schools must devote more time to doctor-patient communication rather than speaking in technical jargon. Providing patients with written material to take home from medical consultations has also been proposed as a means of helping people digest complex information.

The first European Health Literacy Survey is currently underway and will be completed in eight countries by September. Initial results are expected at the Gastein Health Forum in October, with a final report due next year.

Irish liberal MEP Pat the Cope Gallagher said empowering people to understand simple health information enables patients to make crucial decisions.

He said Irish research had revealed that an estimated one in ten patients has taken the wrong dose of medicines because they misunderstood information given to them about drugs.

"Member states spend between 10% and 15% of their budget on health care. However, even in times of financial austerity, I would hope health literacy funding is something that will not be cut because it helps ensure resources are used efficiently by empowered citizens," Mr Gallagher said.

Bulgarian liberal MEP Dr Antonyia Parvanova said a health-literate population could transform how health services are delivered.

"For decades we have put too much emphasis on what health systems and health professionals can do for patients. We will have to look at how informed patients can help themselves in areas like smoking cessation and chronic disease management," she said.

Anders Olauson, president of the European Patients' Forum, said providing quality information to patients and boosting health literacy should be core elements of all European health legislation. Improving literacy is also fundamental to tackling inequalities across Europe, he added.

Olauson said patients support the current proposal for a directive on information to patients but it should be widened.

"At present the proposal is very narrow as it focuses only on prescription medicines. We need to embark on an information-to-patients strategy in which health literacy is embedded," he said.

Olauson said there is a core of support for health literacy in the European Parliament but this must be translated in to action.

Jennifer Lynch, project coordinator of the National Adult Literacy Agency (NALA) in Ireland, said adult literary services have increased in recent years from a low base. Nonetheless, most adult literacy classes in Ireland are provided by volunteers and just two hours tuition per week are available to those who need it.

An OECD study on literacy found that 23% of people who were shown a medicine bottle could not say how often the drug should be taken, said Lynch.

Age is a factor in literacy, she said, with older populations tending to have generally lower standards of formal education. Lifestyle matters too – people with below par literacy levels are more likely to watch more than five hours television and less likely to read newspapers. "This supports the idea that if you don't use your literacy skills you will lose them," said Lynch.

Raising awareness of health literacy among health professionals can help doctors appreciate the importance of clear communication. "Health literacy should be integrated into undergraduate training in medical schools," Lynch said.

Research also suggests simple ways to improve communication, such as providing written information for people to take with them after consulting medical professionals.

Luiza Bara, director for policy and strategy at the European Public Health Alliance (EPHA), said it is important to regulate the information provided to patients in order to ensure that it is accurate.

She said health literacy is about more than just pharmaceutical products and can be broadened to include food labelling. Consumer information on food can influence what people choose to buy and this, in turn, has a major impact on public health, according to Bara.

"However, it's not just about how information is regulated. Healthcare professionals need to improve their communication skills and this is something that should be prioritised by medical schools," she said.

Helmut Brand, head of the International School for Public Health and Primary Care at Maastricht University, is currently working on the European Health Literacy Survey. Ironing out differences in health literacy levels between member states could go some way to closing the gaps in life expectancy in Europe, he suggested.

He advocates using new communication technologies to engage the public. "We should use new media and networks for targeting social marketing," said Brand.

Ilona Kickbursch, director of the Global Health Programme at the Graduate Institute in Geneva, said health literacy is a critical skill in the 21st century. She said there is a clear EU policy basis for tackling the problem, noting that Europe has committed itself to "healthier, safer, more confident citizens".

This, said, Kickbursch, touches on everything from health promotion to managing chronic diseases.

She said making healthy eating choices, choosing health insurers and processing medical information all require a higher level of understanding.

"The increase in chronic diseases is changing healthcare. The system is not equipped to empower patients to self-manage ongoing medical conditions," said Kickbursch.

Teaching life skills in school – such as how to cook, shop and making healthy choices – should become part of the curriculum, according to the Switzerland-based researcher, who added that there may even be a role for a new kind of expert to bridge the gap between specialists and the public.

"We might need to look at a new kind of professional that can broker information. Patients also need independent advice from patient centres," she said.

proposal to change the rules on providing medicine information to patients was included in the 'pharmaceutical package' presented by the European Commission in December 2008 (EURACTIV 11/12/08). 

The controversial measures, which would allow pharmaceutical companies to provide information directly to consumers for the first time, was partly to blame for repeated delays to the long-awaited pharma package. 

Critics say allowing companies to provide factual information on their own products will open the door to advertising of prescription drugs. Proponents of the plan say quality information in all EU languages should be provided so that consumers are not taken in by poor quality online information (EURACTIV 02/09/09).

  • Sept. 2010: European Parliament's public health committee to vote on Information to Patients Directive.
  • 6-9 Oct. 2010: Preliminary results of European Patient Literacy Survey to be published at Gastein Health Forum.
  • End of October: Full sitting of Parliament to vote on patient information.

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