Health education has been described by the WHO as the: “Consciously constructed opportunities for learning involving some form of communication designed to improve health literacy, including improving knowledge, and developing life skills, which are conducive to individual and community health.”

The WHO health promotion glossary describes health education as not limited to the dissemination of health-related information but also “fostering the motivation, skills and confidence (self-efficacy) necessary to take action to improve health”, as well as “the communication of information concerning the underlying social, economic and environmental conditions impacting on health, as well as individual risk factors and risk behaviours, and use of the health care system”. A broad purpose of health education therefore is not only to increase knowledge about personal health behaviour but also to develop skills that “demonstrate the political feasibility and organizational possibilities of various forms of action to address social, economic and environmental determinants of health”¹.

Health education forms an important part of each country’s health promotion activities, which aim to contribute significantly to the reduction of excess mortality, morbidity, to addressing leading risk factors and underlying determinants of health, help strengthen sustainable health system and place health at the centre of the broad development agenda.

Much has been written over the years about the relationship and overlap between health education, health promotion and other concepts such as health literacy and attempting to describe these and their relationship is not easy.

As defined by the Ottawa Charter and the Bangkok Charter for health promotion in a Globalized World (2005)², health promotion is the process of enabling people to increase control over and to improve their health and in the majority of cases, this is viewed as a combination of health education activities and the adoption of health public policies.

Today many authorities hold the view that health promotion comprises three overlapping components: (i) health education, (ii) health Protection and (iii) prevention, the combined efforts of which stimulate a social environment that is conductive to the success of preventive health protection measures.

Tones³ suggested the formula that health promotion derives from the product of health education and healthy public policy. Health education according to this, focuses on building individual’s capacities through educational, motivational skills building and conscious-raising techniques which healthy public policies provide and on other important elements such as those shown in the figure below:

Figure 3.1:

Health Education: theoretical concepts, effective strategies and core competencies – WHO EMRO 2012.

Health literacy on the other hand, is the major outcome of effective health education, increasing individuals’ capacities to access and use health information to make appropriate health decisions and maintain basic health or as WHO defines it: “The degree to which people are able to access, understand, appraise and communicate information to engage with the demands of different health contexts in order to promote and maintain good health across the life-course.”⁴

Given the numerous health education initiative that have been undertaking over the past 30-40 years, by numerous involved stakeholders and official bodies in the context of addressing a wide range of disease oriented programmes, the multiple target groups and issues that have been addressed and the different evaluation methods that have been used, the methods described in brief below, appear to have stood the test of time and comprise essential components of health education programmes and services aimed at enhancing an individuals’ and a community’s health.

• Participant involvement: Community members should be involved in all phases of a programme’s development: identifying community needs, enlisting the aid of community organizations, planning and implementing programme activities, and evaluating results.
• Planning: This involves identifying the health problems in the community that are preventable through community intervention, formulating goals, identifying target behaviour and Health education: theoretical concepts, effective strategies and core competencies environmental characteristics that will be the focus of the intervention efforts, deciding how stakeholders will be involved, and building a cohesive planning group.
• Needs and resources assessment: Prior to implementing a health education initiative, attention needs to be given to identifying the health needs and capacities of the community and the resources that are available.
• A comprehensive programme: The programmes with the greatest promise are comprehensive, in that they deal with multiple risk factors, use several different channels of programme delivery, target several different levels (individuals, families, social networks, organizations, the community as a whole) and are designed to change not only risk behaviour but also the factors and conditions that sustain this behaviour (e.g. motivation, social environment).
• An integrated programme: A programme should be integrated: each component of the programme should reinforce the other components. Programmes should also be physically integrated into the settings where people live their lives (e.g. worksites).
• Long-term change: Health education programmes should be designed to produce stable and lasting changes in health behaviour. This requires longer-term funding of programmes and the development of a permanent health education infrastructure within the community.
• Altering community norms: In order to have a significant impact on an entire organization or community, a health education programme must be able to alter community or organizational norms and standards of behaviour. This requires that a substantial proportion of the community’s or organization’s members be exposed to programme messages or, preferably, be involved in programme activities in some way.
• Research and evaluation: A comprehensive evaluation and research process is necessary, not only to document programme outcomes and effects, but to describe its formation and process and its cost-effectiveness and benefits.

Today health education as a social science draws from the biological, environmental, psychological, physical and medical sciences to promote health and prevent disease, disability and prenatal death through education. Education can occur in many settings and the health educator plays a pivotal role in the success of each programme:

• In schools health is target as a subject and health educators promote and implement coordinated school health programmes, including health services and student, staff and parent health education; and promote healthy school environments and school–community partnerships. At the school district level they develop education methods and materials; coordinate, promote and evaluate programmes; and write funding proposals. A health education component should be incorporated into both basic and continuing teacher training, regardless of subject.
• In college/university campus, health education is part of a team effort to create an environment in which students feel empowered to make healthy choices and create a caring community. Health educators identify needs; advocate and do community organizing; teach whole courses or individual classes; develop mass media campaigns; and train peer educators, counsellors and/or advocates. They address issues related to disease prevention; consumer, environmental, emotional and sexual health; first aid, safety and disaster preparedness; substance abuse prevention; human growth and development; and nutrition and eating issues. They may manage grants and conduct research.
• In the work place health education focus on performing or coordinating employee counselling as well as education services, employee health risk appraisals, and health screenings. Health educators, design, promote, lead and/or evaluate programmes and develop educational materials and write grants for money to support these projects. They help companies meet occupational health and safety regulations, work with the media and identify community health resources for employees.
• In health care settings health educators educate patients about medical procedures, operations, services and therapeutic regimens, and create activities and incentives to encourage use of services by high-risk patients. They conduct staff training and consult with other health care providers about behavioural, cultural or social barriers to health, and promote self-care. They develop activities to improve patient participation on clinical processes, educate individuals to Health education: theoretical concepts, effective strategies and core competencies protect, promote or maintain their health and reduce risky behaviour, and make appropriate community-based referrals and write grants.
• Health education in the community is undertaken by health educators from NGOs and government sector and help a community identify its needs, draw upon its problem-solving abilities and mobilize its resources to develop, promote, implement and evaluate strategies to improve its own health status.

The professionals involved in health education come from wide range of disciplines including medical, nursing, genetics, biological and social backgrounds. Their work is very important and is mainly directly concerned with communities and individuals. It is crucial that the rights and privacy of individuals and communities are respected, and that programmes are developed on an equitable basis, addressing the needs of the most vulnerable population groups and embracing the following principles:

• respect for human dignity and rights
• respect for individual and family independence
• full consent
• confidentiality
• nondiscrimination or stigmatization
• equity in access, coverage and service delivery
• respect for cultural values and cultural diversity
• refraining from conflict of interest, particularly commercial interest
• integrity and good personal conduct.

In the field of genetic diseases, it is important for countries to develop strategies to ensure that the advances which have taken place in the area of genetics and genomics are harnessed to benefit the health of their citizens, and to undertake an appraisal of the potential of genomics for their citizens. This means taking careful account in the creation of policy of not only the scientific and technical aspects of this area, but also of the not inconsiderable ethical and social implications.

For policies to be sustainable and effective particularly in the area of genetic diseases with considerable family/social repercussion, they need to be socially acceptable. This does not mean that they ought to be constructed to appease the masses; rather, it means that they should be informed by the views of a public that is itself well informed. There is therefore a need to educate ordinary citizens in a balanced manner about advances in the science, including the ethical, legal and social implications they pose. Many encouraging examples of successful medical interventions that were preceded by public educational efforts exist today, as demonstrated by the example of genetic screening and counselling programmes in the USA, Canada, Italy, Greece and Cyprus and in more recent years in the UK, the Netherlands, Belgium and outside Europe: Iran, Bahrain, UAE just to name a few success stories in the filed of Hb disorders. Mediums of communication like the television, workshops and print campaigns have proved to be effective for raising public awareness. An ongoing analysis of public perception of genetics must be incorporated into policy making so that it truly addresses the areas of public concern, and constructively addresses the apprehensions of society towards genetics.

Countries interested in empowering their citizens to make better choices and to participate in shaping the direction of technological development and its application, will need to do more than educate a passive constituency. Raising awareness is important for providing a general knowledge base, but this heightened awareness has only limited value if citizens are not engaged in public dialogue that encourages their active debate and participation in policy-making. While public engagement, particularly in large and diverse communities, is not easy to achieve, various methods-such as surveys, collaboration with local leaders and opinion shapers, and even innovative approaches such as interactive theatre and creating modules for classroom discussion in local schools-can be employed in different contexts to inform, generate discussion, and provide important input to policy-makers about how to approach often difficult and controversial issues.

Health education programmes in every country particularly in the field of genetics may be confronted with significant difficulties, as effective communication involves a range of sensitive issues including marriage, divorce, child breading and termination/intervention of pregnancy.

In addition, in large, heterogeneous populations with Hb disorders prevalent in their indigenous populations for example, in India and Pakistan, and with fragmented health services, promotion of health education may be confronted with many additional and significant difficulties. In these cases, the inclusion of many and different components related to language, dialects and culture need to be seriously considered and taken onboard in order to achieve effectiveness and avoid creation of stigmatization and/or other ethical problems and dilemmas.

In the same way but from a different angle, Europe, where in the majority of countries Hb disorders are diseases literally introduced into the indigenous populations (the first countries being UK and France) through immigration, has faced, faces and will continue to face huge difficulties and challenges in developing appropriate services including health education programmes to reach across many and different language, social, culture and religious barriers. The UK constitutes the best such example, where, despite existence and availability of high quality genetic services for long, the poor update of prenatal diagnosis, by ethnic minorities most of which are now in their third or fourth generation of settlement, as shown in a published analysis in 2000, resulted in poor prevention results. The promotion of nationally controlled programmes since then in the UK however, and the particular focus paid on health education programmes targeting to reach ethnic minorities and make services both available and accessible, has already started to show significant improvements.

Inaccurate, misinterpreted, unrealistic, overoptimistic or overly pessimistic information can have a very serious impact on public opinion leading to misguided conclusions and decisions. Hence the language barrier in transmitting the correct desired messages amongst ethnic minorities or even amongst populations of different dialects within a country should never be underestimated as well as the style and ways in which those messages reach the public and the individual.

Last but not least, health education should never be an isolated component of a strategy, particularly with regards to the control of a genetic disease but one, which, although considered as a priority and a first step, is part of a country’s national programme. Political commitment is essential to build up the next steps of a strategy and ensure the sustainability of these. Otherwise, expectations raised to the public will not be met and essential services for correct diagnosis, appropriate counselling, care and other services including prenatal diagnosis, necessary to support the individuals’ decision, will not be adequately available.

In conclusion, and with regards to Hb disorders, every country should have, in addition to the support from its Government, the Ministry of Health, WHO and other official bodies, a designated reference centre for health education in Hb disorders, equipped with resources to produce and regularly update reference materials.

Such centres should also be able to produce a range of high quality material on the treatment and prevention of Hb disorders, providing information that:

1. raises public awareness of the existence and magnitude of the problem, and the value of screening;
2. provides details of laboratories and screening tests available for the detection of carriers, including clear advice on interpreting test results;
3. provides specific and correct information to be given to individuals identified as carriers

The centre needs to meet the changing needs of the population by continually updating information (including video material) on every aspect of thalassaemia, in line with increasing familiarity with the disease and rising public awareness. Part of this process involves the continuing education of staff members through their participation in international workshops and worldwide conferences.

In addition, relevant NGOs should be implicated actively in these efforts and the contribution of Thalassaemia International Federation (TIF) for example, on the subject of health education and awareness, has been of pivotal value to many countries (please refer to http://www.thalassaemia.org.cy). At a time when many of the world’s religions are still struggling to define their position on genetic diagnosis and the termination of pregnancy, educational material must be very carefully designed. Even where religious leaders do succeed in finding common ground in their thinking on such controversial issues, in many societies it is likely to take some time for the majority to reach the same conclusions -- particularly in countries with low rates of literacy and powerful additional cultural and religious constraints. Clearly, it would be better if methods of controlling the disease that do not involve terminating pregnancy, such as pre-implantation diagnosis (PGD), were to become more widely available and accessible.

Given that it is likely to be some time before better forms of treatment or cure are developed, countries in which thalassaemia and other Hb disorders pose a major challenge in the new millennium, will have to seriously consider whether prevention programmes of this type are most appropriate to their circumstances. Each country will need to develop an individual strategy, backed by strong health educational programmes, appropriate to the local epidemiology of the disease, religious and cultural characteristics, current service structure and economic resources. In addition every effort should be made by Governments to integrate this strategy into national programmes on Rare Diseases, Non – Communicable Diseases (NCD) or birth defects programmes to ensure its sustainability.

Footnotes

1.

Health promotion glossary. Geneva, WHO 1998. http://www​.who.int/hpr​/NPH/docs/hp_glossary_en.pdf Accessed 23 March 2011

2.

Glossary of terms used in Health for All series. Geneva, WHO, 1984

3.

Tones K. Health Education, beahaviour change and the public health: Oxford textbook of public health, 3rd edition, 1997

4.

Health Education: theoretical concepts, effective strategies and core competencies – WHO EMRO 2012