Health Literacy: skills for living

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This article is part of our special report Future of European Healthcare.

The first half of 2013 will witness the Council and Parliament finalising the Commission's new proposals for updating the directive on information to patients on medicines. The new regime that this ushers in will aim to tackle almost half of Europe's patients, who are 'health illiterates'.

Background

The most recent data reveals that almost half of Europeans (47%) show limited health literacy, with sharp differences between countries ranging from 1.6% inadequate levels of health literacy in the Netherlands to 26.3% in Bulgaria.

One in ten patients take the wrong dose of medication because they misunderstand the information given to them during consultations with doctors and other health professionals, data shows.

This has serious public health consequences, as well as economic implications for health services.

Advocacy groups say investing in health literacy pays off in the long run and empowers patients to play a more active role in managing their health care.

This will become increasingly important as chronic diseases – such as diabetes and asthma – rise. Patients will be expected to manage their own conditions at home rather than relying on daily contact with health professionals.

On 11 October 2011, the European Commission adopted revised proposals on information to patients about prescription-only medicines. These proposals are designed to ensure patients have clearer, more reliable information.

The proposals set out for the industry exactly what and how information should be provided, including:

  • Preserving a strict ban of any direct-to-consumer advertising, and
  • Obliging industry to publish certain information that is particularly important for patients, such as the labelling and the package leaflet.

The proposals strengthen the rules on pharmacovigilance – the monitoring of the safety of medicines on the market. These changes include:

  • The automatic triggering of an examination at EU-level when a member state takes action on a medicine due to serious safety concerns, and
  • When a company voluntarily withdraws a medicine from the market it must explain the reason.

These proposals received the endorsement of the European Parliament on 18 December 2012 when MEPs in the environment and public health committee backed the draft legislation.

It is now expected to be passed by the Council and parliament during 2013.

Next year the Commission will launch an on-line ‘Wikipedia’-style tool for patients called Health in Europe: Information and Data Interface (HEIDI)

The new 'HEIDI' site is intended to be a one-stop-shop on health information and data, updated by public health experts, researchers, civil society and national authorities.

The measures are controversial because they allow pharmaceutical companies to provide information directly to consumers for the first time. 

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).

Health campaigners argue that if more information is put into the public domain, a sustained effort to improve health literacy will become essential.

An eHealth action plan published by the EU executive in December 2012 provides for inititives to foster digital health literacy but promoting projects through the EU’s research funding programmes.

Issues

Health literacy has been on the agenda of the EU executive for several years, and the proposal to change the rules on providing medicine information to patients was first included in the 'pharmaceutical package' presented by the European Commission in December 2008 (EURACTIV 11/12/08). 

The severity of Europe's health literacy deficit has been measured carefully by an EU-funded European Health Literacy Survey, which reported its results at a special conference in Brussels in November 2011.

In addition to the proposed reforms to the directive on patient information, the Commission has made clear its commitment to improving health literacy through its inclusion in a number of instruments – such as its Health Program 2009-2014 and in the Innovation Partnership of Active and Healthy Ageing.

Adult literacy problems, particularly amongst older generations, can prevent citizens from grasping vital details about medicines. However, poor standards of numeracy can also cause problems, especially when it comes to understanding risks.

Health literacy is also becoming an issue as e-health develops. Addressing citizens' trust and competence in technology, particularly regarding health care, will be the key to whether the public embraces new health technologies.

The traditional model of patients relying on face-to-face contact with doctors is changing as patients take control of their own illnesses, the Internet makes vast quantities of information available and telemedicine allows for remote consultation and health monitoring.

Filling the health literacy gap

Raising health literacy will help empower patients and iron out inequalities across the EU, as adult literacy rates tend to be higher in northern Europe than in southern and eastern states.

Research shows that giving patients written information to take with them after medical consultations helps to ensure that the key messages get through.

Patient groups also want doctors and pharmaceutical companies to make a continuous effort to present information in jargon-free plain language.

As lifestyle factors are a growing cause of ill health, stakeholders in the food and leisure sectors are also under pressure to step up their efforts to inform consumers.

Tackling literacy rates in schools and through adult education courses is seen as part of the solution, but health professionals are also under pressure to improve their communication skills.

Academics and patient lobbies say medical schools must devote more time to doctor-patient communication rather than speaking in technical jargon.

Health literacy and austerity

Another controversial aspect in the debate on health literacy relates to the tightening fiscal budgets throughout the eurozone. As the Commission encourages more direct information to patients, critics will be on the look out to see whether such measures – and especially moves to introduce on-line tools – are seen as ways to save on health costs and replace face-to-face consultations.

eHealth and health literacy

In addition to its separate initiatives, health literacy plays a key role in the Commission’s action plan to introduce digital solutions in Europe's healthcare systems.

Giving patients more control of their care and bringing down costs increasing awareness and skills among patients is a central aim of the initiative – which was given fresh impetus in a new eHealth action plan published by the Commission in December 2012.

The plan is designed to push the digital agenda in healthcare. While patients and health professionals are already using telehealth solutions and millions of Europeans have downloaded smartphone apps to keep track of their health and wellbeing, digital healthcare has yet to reap its great potential to improve healthcare and generate efficiency savings.

The new plan includes a list of actions aimed at tackling legal and technological issues, but also designed to increase digital health literacy.

Starting with the Competitiveness and Innovation Programme during 2013 and continuing under Horizon 2020 – the new research framework programme for Europe – the Commission will support activities aiming at increasing citizens’ digital health literacy.

Positions

In a speech to a recent Brussels conference on health literacy, Health Commissioner John Dalli said: “Low health literacy is a particular issue of concern amongst older people. This is why the European Innovation Partnership has singled-out health literacy as one of the areas for enabling innovation in healthy ageing.”

Dalli said that the aim of the Partnership is: “To help empower older people to understand for themselves the real value of medicines, tests and treatments – and take charge, as 'co-managers', of their own health.”

“Health literacy clearly has a major role to play in managing chronic diseases and help operate a shift towards more preventive strategies, Dalli told the conference, adding: “Research shows that people with inadequate health literacy are less knowledgeable about the importance of preventive health measures and are therefore more likely to be admitted to hospital.”

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.

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," Gallagher 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 supported 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 was a core of support for health literacy in the European Parliament but this must be translated into action.

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.

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.

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 health care. 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.

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 of 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.

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

Timeline

  • 24 June 2010: MEPs host seminar on health literacy in European Parliament.
  • Sept. 2010: European Parliament's public health committee vote on Information to Patients Directive.
  • 11 Oct. 2011: Commission publishes amended directive on information to patients on medicines.
  • 23-24 Nov.2011: Health literacy conference in Brussels; further results of the Maastricht health literacy survey published.
  • 18 Dec. 2012: Parliament’s environent and health committee approves of the Commission’s proposals on the Transparency Directive (information to patients on medicines)
  • 2012: Council and Parliament debate Commission proposals. Commission to launch new web site, HEIDI, partly in an effort to improve health literacy.
  • 2013: Information to Patients provisions set for final agreement between the Parliament and the Council

Further Reading

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