Once again we would like to thank all of you who have emailed us and endorsed the Declaration on Patient-Centred Healthcare.  If you have not yet endorsed the declaration, instructions about how to do so can be found at the bottom of this article.  We also invite you to suggest topics that we could look at in the newsletter by emailing us at info@patientsorganizations.org.

Principle 5. Patient Information – Accurate, relevant and comprehensive information is essential to enable patients and carers to make informed decisions about healthcare treatment and living with their condition.  Information must be presented in an appropriate format according to health literacy principles considering the individual’s condition, language, age, understanding, abilities and culture.

As the principle above recognises, high quality patient information is essential to enable patients and carers to make informed decisions.  The quality of information is dependent on how well it caters to health literacy principles.  IAPO defines health literacy to include an individual’s reading level, as well as language, education level, cultural background, and readiness to receive health information by oral or visual means.  All these factors may create barriers to understanding, and therefore to individuals’ ability to take action to improve their health.

In 2002 following a process of consultation with IAPO’s global network of patients’ organizations and health-related organizations, IAPO published a Policy Statement and Guidelines for Health Literacy. The research and consultation process later fed in to the development of the principle of Patient Information that forms a key part of the Declaration. 

The Policy Statement issues a call to all stakeholders who communicate with patients, carers and citizens to recognize that low health literacy is a problem worldwide, resulting in poor judgements about health options and ineffective treatment and rehabilitation. 

These stakeholders include:

·      Patients and patients’ organizations

·      Carers and carers’ organizations (including family members)

·      Healthcare professionals, practitioners and students (e.g. physicians, nurses, pharmacists)

·      Healthcare providers (e.g. hospitals, hospices, home care institutions)

·      Governments (at local, national and regional levels)

·      Third-party providers (e.g. social security, insurances)

·      Healthcare-related services and industries (e.g. pharmaceutical, medical devices, biotechnological)

·      Any intergovernmental, non-governmental, quasi-governmental and humanitarian organizations

     (e.g. WHO, Oxfam) when dealing with health-related issues

The Policy Statement makes the following recommendations:

1.      Stakeholders should extensively review the existing health-related information they produce and the way in which this is communicated. All future materials should be planned according to health literacy principles.

2.      All information, whether posters, brochures, pamphlets, audio, video or television material, should incorporate the following:

·      A clear and understandable message

·      Relevant and tailored content

·      Culturally and linguistically appropriate format

·      Reader, viewer or listener involvement

·      Pilot testing on key audiences

3.      In providing health-related information, statements or articles to the media, all stakeholders should follow health literacy guidelines and assert that they have done so, noting basic health literacy concepts if possible.

4.      All patients’ organizations should insist on health literacy principles being applied to all the communication materials produced by themselves or other stakeholders.

In addition to the Policy Statement IAPO has produced Guidelines on Health Literacy that can act as a checklist to and provide a practical tool to aid international, regional, national and local organizations in all activities related to Patient Information.  The guidelines provide advice about how to set clear objectives, engage the reader/viewer, make the information easy to read/watch and how to test materials aimed at patients for readability and conformity to the principles of health literacy.

Links – Patient Information

·       For further information, references and to download our Policy Statement and Guidelines, visit www.patientsorganizations.org/information.

·       To download the Health Literacy Policy Statement, click here.

·       To download the Health Literacy Guidelines, click here.

Links – Patient-Centred Healthcare

·       To download a copy of the Declaration, click here.

·       If you would like to know more about the consultation process involving patients’ organizations, click here.    

·       A review of the patient-centred healthcare definitions can be found here.

To express support for the Declaration on Patient-Centred Healthcare send an email to info@patientsorganizations.org with the subject title: Support for IAPO Declaration on Patient-Centred Healthcare.  In your email please say whether you are supporting the declaration as an individual or as an organization.  We will build up a listing of the growing number of organizations and individuals that support the principles of the Declaration and use this to strengthen our call with policy-makers, health professionals and others.