The need for palliative care is increasing as the world population ages. According to studies, such care is required for more than 61 million patients and their families worldwide.

In Greece, the relevant healthcare provisions are considered fragmentary, both in terms of the range of services provided, as well as in regard to state funding.

Greece is one of the countries where specialized palliative care services are deemed inadequate and are mostly provided by NGOs to outpatients, or at home, and to a limited range in relation to the country’s population.

The number of patients in need of palliative care in our country exceeds 135,000 persons annually and is set to increase in the coming decades. Given the fact that there are currently only three such providers in the country, the capability of offering palliative care services is considered to be extremely limited and far from the standards that apply in most European countries.

The proposals of the Greek Patients Association:

  • Development of the appropriate institutional and legal framework for the establishment and operation of palliative care services in the country, including the regulatory framework for the availability of drugs.
  • Establishment and operation of the necessary facilities throughout the country, according to the standard specifications.
  • Creation of a pool of healthcare professionals, who will be well-trained in matters of palliative care, in order to offer their services to patients who need them.
  • Promoting research to improve the design, implementation and evaluation of services.
  • Raising awareness among families, caregivers and across society regarding the importance of providing efficient palliative care services, and ensuring effective cooperation between the stakeholders, under the coordination of the Ministry of Health.

The Health technology assessment (HTA) is the basic tool which can ensure the efficient access of citizens to new health technologies, and its results will be followed up by a number of processes, such as negotiation, controlled entry agreements, risk-sharing or price volume agreements and value-based agreements.

It is essentially a rational and transparently structured process, which should aim at measuring and certifying the added value from the introduction of a health technology, ensuring universal access to new technologies based on the specifics and capabilities of the country and taking into account the needs and the experience of patients, as these will be expressed through an established, distinct and equal role in the evaluation processes.

The proposals of the Greek Patients Association:

  • Ensuring transparency and accountability at each stage of the HTA process.
  • Achieving universal access to new technologies based on treatment protocols.
  • Timely and documented evaluation and certification of new technologies.
  • Establishment of equal participation of patients in the respective HTA procedures.
  • Normalization of the Ministry of Health’s Negotiation Committee operations.
  • Acceleration of the procedures for the establishment of the HTA Organization.
  • The HTA Organization to operate as an independent body.

The reform of the health sector in Greece requires the radical rearrangement of the existing national model of health services provision, in order to drastically improve both the quality of services and the experience of the patient, as well as the cost-effect ratio that characterizes the current system.

Health policies should be characterized by innovation and specialization, ensure the quality upgrade of healthcare services offered to citizens, the rationalized operation and management of the Ministry’s departments and supervised bodies, the development of accountability procedures (systemic and individual) related to the provision of healthcare services to citizens and the continuous measurement of efficiency and effectiveness (cost in relation to results). They should also balance out regional disparities, taking into account the remote areas and the particular insular geography of the country.

The proposals of the Greek Patients Association:

  • Increase the financing of the healthcare system from the state budget, increase the percentage of public health expenditures and adopt measures for limiting private expenditure.
  • Creation of a decentralized health system with the gradual transfer of responsibilities to the Healthcare Regions and to independent organizations.
  • Implementation of a meritocratic administrative model that will be free from party affiliations and patronage culture.
  • Systematic evaluation of the effectiveness, efficiency and needs of all health care providers within the National Health System.
  • Implementation of new information, communication and e-government technologies.
  • Full and complete implementation of the tools provided by the negotiation process, aiming at the reimbursement for drugs and medical equipment used, based on the proven therapeutic value.
  • Participation of patients in decision-making processes (Ministry of Health, Healthcare Regions, health organizations)

Many of the observed inequalities in healthcare services are related to the particulars of geographical distribution. During the 1980s and 1990s, geographical inequalities in hospital infrastructure were particularly intense in Greece. With the development of the regional hospital units in areas outside major urban centres, these imbalances were mitigated but still remain high, especially in remote areas, and are linked to understaffing and inefficient allocation of available resources.

The proposals of the Greek Patients Association:

  • Adequate coverage of medical service needs for hospitals and healthcare facilities in remote areas.
  • Use of telemedicine in order to ensure access to diagnostic, monitoring and treatment services for populations residing in remote areas.
  • Extension of the ability of General Practitioners to prescribe specialized medical tests (especially imaging tests) and drugs to residents of remote areas, especially to the chronically ill.
  • Prolongment of the validity of E.OP.Y.Y. referrals concerning outpatient/imaging tests, that are prescribed to remote area residents, especially to those who are chronically ill, e.g. issuing 6 month long referrals or with the possibility of automatic renewal.
  • Improving the quality of services provided in Radiotherapy Units.
  • Introduction of locality requirements for the employment of NHS medical, nursing and administrative personnel in remote areas.
  • Introduction of a mandatory minimum stay for the newly appointed doctors in remote areas. The same rule should apply for nursing and paramedical staff.
  • Incentives for the operation of private clinics and private healthcare facilities in remote areas.

Effective public health policies constitute a fundamental precondition and absolute priority for achieving universal access and eliminating inequalities, in the context of the system responding to healthcare needs and addressing major risk factors and worsening socioeconomical inequalities.

Public health policies, combined with an integrated primary care system and a high level of hospital care, are a pillar of the uniform healthcare system, to which every person is entitled. Universal health coverage and ensuring that the distribution of the limited financial resources will be based on social interest, remains the greatest challenge.

The proposals of the Greek Patients Association:

  • Systematic monitoring of the of the population’s health, as well as of the risk factors that affect and burden it.
  • Epidemiological monitoring and evaluation of the most important diseases that occur within the Greek population.
  • Recording and improving the lifestyle of the population, aiming at a healthy way of living.
  • Providing continuous information to the public regarding health and hygiene issues.
  • Redesignment, coordination and evaluation of Public Healthcare services at a national, regional and local level, with the goal of improving the population’s quality of life.
  • Recording, evaluating and covering the population’s basic health needs.
  • Regulation of natural resources, waste, air pollution, etc., aiming at environmental health.
  • Increasing health checks at the country’s borders.
  • Creating a network of Public Healthcare services (central and regional) between the primary healthcare services and the respective hospital and outpatient facilities of the healthcare system.

Since 1948, the World Health Organization has included obesity in its list of diseases. A disease is defined as any condition that reduces the quality and quantity of life. Obese people have a clearly reduced quality of life, as well as a shorter one, since they face many and severe health complications more often compared to people with a normal body weight.

Greece and the other southern European countries (Italy, Spain, Cyprus, Malta) have the highest childhood obesity rates in Europe, as about one in five children living in these areas (18% to 21% depending on the country) is obese, according to the latest WHO data for the years 2015-2017. The lowest rates of childhood obesity, ranging from 5% to 9% of the total number of children, are recorded in France, Norway, Ireland, Latvia and Denmark.

The promotion of healthy nutrition and exercise contributes to the reduction of obesity, as well as the related hypertension, heart disease, diabetes and certain cancers risks. Therefore, healthy eating and exercise significantly improves the quality of life and make a decisive contribution to public health.

The proposals of the Greek Patients Association:

  • Strengthening European cooperation on food and nutrition.
  • Implementation of information and public awareness campaigns on nutritional issues.
  • Targeted and interactive information programs for students about the benefits of healthy eating in schools.
  • Classification and labelling of packaged foods according to their nutritional value at European level.
  • Involvement of patient organizations in the drafting of legislation that will ensure that the nutritional information on food packaging will be presented in a clear, easy to read and understandable way.
  • Further cooperation between consumer and patient organizations in matters of nutrition and health.
  • Provision of free nutritional services by the national healthcare system.

Citizens are entitled to receive healthcare in any European Union country and to be reimbursed for the relevant expenses occurred abroad from their country of origin.

Directive 2011/24 / EU sets out the conditions under which a patient can travel to another country for medical treatment and be reimbursed. This covers the costs of medical care, prescription of drugs and medical equipment.

As health policies and systems become increasingly interconnected, the directive makes it easier to access 1) information about available healthcare services in other European countries and 2) healthcare alternatives and / or specialist treatment abroad.

The proposals of the Greek Patients Association:

  • Full implementation of Directive 24/2011 / EU on cross-border healthcare
  • Implementation of policies for informing patients about their rights, their treatment options and reimbursement on a European level.
  • Interconnection of Member States’ healthcare systems within the development of e-health.

Even though there are many registered definitions of health literacy, their common features include skills, understanding, accessibility, user experience, information, knowledge, empowerment and decision making.

One definition adopted by the World Health Organization is “the ability to make sound decisions about our health, in the context of daily life at home, in the community, in the workplace, in the healthcare system, in the marketplace and in politics.”

From the patient’s point of view, the knowledge and skills acquired through health literacy leads to the strength and empowerment required in order for one to properly manage a disease or condition and its effects on the quality of one’s life.

Health literacy is a useful, but also a crucial strategy for ensuring equality in health, empowerment and patient-centered care in the modern environment. Improving the skills of patients, citizens and healthcare professionals should be achieved through an overall strategic planning and a user-oriented healthcare environment.

The proposals of the Greek Patients Association:

  • Further study of health literacy’s added value and its part in the healthcare sector.
  • Training health professionals on how the information they provide will be accessible and useful to the average citizen.
  • Employment of the internet for the dissemination of health literacy material to citizens.
  • Cooperation of all stakeholders with the patient associations, for reaching specific goals.
  • Intergovernmental cooperation within the European Union on issues of public awareness and information.

Young patients living with chronic diseases often face serious obstacles within the education system. The effects of these chronic conditions are not only medical, as they can also affect learning performance, emotional and physical development and peer relationships. They can also increase everyday stress and contribute to depression, cognitive impairment and fatigue. These problems are often overlooked by the staff in educational institutions, such as schools or universities.

Chronic patients may often face situations such as missed classes, medical visits or rehabilitation treatments. In addition, they may be affected by their treatments’ side effects and experience mood swings resulting from their living conditions and the management of their disease.

Additionally, when the condition is not always visible, patients may experience stigma and be accused by their classmates, or even the teaching staff, of taking advantage of their illness. The school environment impact has even more intense and sensitive attributes where mental health is concerned.

The proposals of the Greek Patients Association:

  • Awareness campaigns on chronic diseases aimed at the teaching staff.
  • Initiatives to combat stigma and school bullying against people belonging to vulnerable groups.
  • Measures to facilitate the everyday life of pupils or students with chronic diseases, such as medical leaves of absence, etc.
  • Making educational institutions accessible to students with disabilities, evaluation of buildings and creation of an accessibility works register.
  • Awareness actions for local entities.
  • Simplification of bureaucratic procedures for the necessary conversions of school buildings.
  • Prompt and full staffing of schools with special support staff.
  • First Aid training of school personnel.
  • Development of special programs where all students will participate equally, regardless of their physical limitations due to illness or disability.

According to the World Health Organization, vaccination each year saves about 3 million lives worldwide and it is estimated that vaccines will prevent approximately 25 million deaths within the next decade. Despite the obvious and scientifically proven benefits of vaccination, measles outbreaks and the recurrence of other diseases that can be prevented by vaccination have been recorded in Greece as well, due to insufficient vaccination coverage.

The patients’ associations proposals focus on two main courses of action: Unimpeded and complimentary access of the general population to vaccines, pursuant to international and European guidelines, and raising awareness and informing the public about the benefits of vaccination and preventive medicine.

The proposals of the Greek Patients Association:

  • Updating the National Vaccination Program in accordance with the international and European guidelines.
  • Mitigation of vaccine shortage risk, through a central real-time monitoring system and continuing need assessment.
  • Setting vaccination coverage targets and evaluation of attainment levels.
  • Use of mobile units for the vaccination of special social groups such as refugees – immigrants, Roma, the elderly, people with disabilities, etc.
  • Providing access to vaccination regularly and at different stages of life, for example in schools and workplaces.
  • Timely, continuous and responsible dissemination of information to parents, guardians and the general population, regarding the benefits, safety and effectiveness of vaccines and their role in protecting the health of individuals and public health.
  • Continuous education and training of health professionals regarding vaccination and vaccination coverage.

The empowerment of the patients constitutes one of the main conditions for the betterment of healthcare quality. It is both a prerequisite and a result of a health system that implements policies focused on, and guided by, the recipient of healthcare services and their experience.

Patients’ empowerment is defined in many ways, depending on the context and goals. A comprehensive definition is: “the process that helps people gain control of their lives and increases their ability to take initiatives and act on issues which themselves perceive as important”. Empowerment aspects include health literacy, co-decision making and self-management.

Patients with chronic conditions are often referred to as important resources of the healthcare system, but remain unused. It is a proven fact that patient-centered healthcare models achieve better quality of care and contribute to system efficiency. However, the concept and process for patient empowerment remains underdeveloped in Greece.

The proposals of the Greek Patients Association:

  • Implementation of actions to promote health literacy of patients and citizens in general.
  • Development of patient’s associations skills in order for them to represent health care recipients and assert their rights more effectively.
  • Use of internet and new technologies for the dissemination of information that will contribute to patient empowerment.
  • Participation of patient representatives in health policy decision – making process.

National addiction policies should focus on, and ensure, the universal coverage of the population and access to the related services, based on the specific needs of addicts, as well as ensure respect of their rights and the protection of public health.

The addiction treatment package should include prevention programs, harm reduction services such as streetwork and supervised use programs, opioid substitution programs, detox and rehab programs, psychosocial support and social reintegration interventions.

The proposals of the Greek Patients Association:

  • Prevention and reducement of the harmful effects of alcohol.
  • Promoting healthy alimentary choices.
  • Prevention and promotion of awareness regarding the harmful effects of smoking, including second hand smoking and e-cigarettes.
  • Complete and universal ban on smoking in public places.
  • Coordination of the interventions held by the stakeholders involved in the battle against drugs, within a framework of strategic planning.
  • Emphasis on the implementation of psychoactive substance harm reduction programs.
  • Operation of medically supervised injecting rooms with adequate population and geographical distribution.
  • Free distribution of injecting tools, pursuant to the World Health Organization guidelines.
  • Promoting the cooperation between public facilities and the academic community and non-governmental organizations that are active in the field.
  • Involvement of representatives of the drug users’ community in drug policy decision–making process.
  • Emphasis on battling emerging addictions, such as online gambling and internet addiction.

A percentage of chronic patients are not able to continue working due to health reasons. Nevertheless, many of them continue working, or wish to.

With the proper support, these patients will be able to work and this will contribute to the improvement of their quality of life and will minimize the negative financial consequences and the danger of social exclusion.

As to the employers, there are many benefits in hiring chronic patients and maintaining their services. Such a choice promotes the company’s values and principles and communicates a positive message of inclusion towards customers and citizens.

Patients, though, often deal with very little empathy from their employers, in matters of managing their disease. Supervisors’ reservations about costs, productivity, and medical leaves, may intensify a sense of marginalization and have a negative impact on the patients’ self-esteem. This results to patients concealing their disease from employers, even if this affects their treatment or its outcome.

The proposals of the Greek Patients Association:

  • Enhancement of the legal and regulatory framework for the rights of chronic patients in the work environment and regular monitoring and evaluation of its implementation.
  • Improvement of the disability assessment framework, in order to include all chronic diseases that cause disabilities in the respective national disability charts.
  • Adoption of measures that will promote means to counterbalance the loss of functionality in the work environment.
  • Information and education campaigns for employers and employees about the social aspect of chronic diseases and fighting stigma.
  • Adoption of appropriate measures to support caregivers and ensure their right to work and access to extended leaves.

Given the rapid technological advancement in the IT and communications sectors, e-governance can become an extremely important tool for health reforms.

To this end, national healthcare policies should focus on upgrading the National E-Health System, as a part of the gradual implementation of a cohesive strategy that includes interoperability support, e-government and central coordination.

The proposals of the Greek Patients Association:

  • Recording and creating registers for every health sector and activity, such us care facilities, supervised entities, healthcare professionals, clinical practices, drugs, clinical trials, etc.
  • Homogenization of digital applications and services within the healthcare system.
  • Creation of an integrated data management and projection web application, with the necessary security and authentication features, where the user will be able to access and review their medical data.

According to the World Health Organization, eHealth is defined as the use of information and communication technologies in the health sector. Important application fields of this particular tool include treatment, research, workforce training, epidemiological monitoring and public health.

ehealth can be utilized as a means for more efficient provision or exchange of information, both among healthcare professionals and patients or citizens. It may also aim at the improvement of health systems management or the evaluation of the public healthcare services.

The proposals of the Greek Patients Association:

  • Expanding online services and tools focused on providing health and wellness information to patients.
  • Emphasis on the utilization of telemedicine in remote areas.
  • Training of healthcare professionals on the use of electronic media.
  • Empowering and informing patients as to the possibilities provided by technology.
  • Ensuring patients’ rights and protecting their personal data.

21.3% of our country’s population today is people over 65 years old, and according to estimates, this number will be approximately 30% in 2030 and over 35% in 2050. In its recent report, the World Bank identifies population aging as one of two factors that, if left unchecked, will adversely affect the development and the sustainability of healthcare and social services of any country in the coming years.

As the general population ages, many chronic diseases become more common. Patients with chronic diseases that occur at a young age often live longer, thanks to modern medical treatments. However, the increase in life expectancy does not meet the challenges associated with quality of life, daily life and the discrimination and difficulties that these people experience due to their health status.

The proposals of the Greek Patients Association:

  • Adoption of an integrated, all-encompassing approach to health and social care.
  • Protecting elderly patients’ rights and fighting discrimination and stigma.
  • Providing quality information that meets the special needs of elderly patients.
  • Ensuring patients’ access to the required services throughout the duration of their treatment.
  • Joint decision-making and empowerment for senior citizens and their caregivers.
  • Ensuring access to innovative treatments and technologies to cover their needs.

Medical equipment consists of products or devices generally intended for medical use. Their availability and certification are regulated by the competent national authorities, but also by the European Medicines Agency (EMA), in accordance with EU legislation.

Medical products in the European Union are subject to evaluation procedures, in order to prove that they meet the legal requirements, and to ensure that they are safe, and function as intended. The procedure usually involves checking the manufacturer’s quality systems and, depending on the type of device, an overview of the technical documentation regarding its safety and performance.

Upon approval, manufacturers are entitled to affix a CE mark (Conformité Européenne) to the equipment.

The adoption of Regulation (EU) 2017/745 on Medical Devices (MDR) and Regulation (EU) 2017/746 on In Vitro Diagnostic Medical Devices altered the relevant European legal framework, introducing new responsibilities for the EMA and the respective national agencies. Both regulations came into force in May 2017.

The proposals of the Greek Patients Association:

  • Improvement of transparency and patient information, in order to ensure public confidence in the safety of medical devices.
  • Substantial participation of patients, both individually and collectively, in the medical device development process and establishment of their representative’s participation in decision-making bodies and scientific committees for the evaluation of technologies, on a national and European level.

Clinical trials are a significant investment that offer high added value to the patients, the healthcare system and the national economy.

Patients participating in clinical trials enjoy rapid access to new and innovative treatments, receive their medication free of charge, as well as their full treatment, including laboratory and diagnostic tests and medical monitoring and care. As for the national economy, new investments and international capital are attracted, the country’s scientific personnel acquire research know-how and training, and employment and entrepreneurship are enhanced.

For the creation of a favorable environment for attracting and developing clinical trials in Greece, it is necessary to simplify the approval procedures and their centralized monitoring by the National Drug Agency (EOF) and the National Ethics Committee, in order to eliminate the unjustified delays, which become a deterrent.

The proposals of the Greek Patients Association:

  • Patient involvement in designing clinical trials from the very first stages as is the case in many countries in Europe, the USA, etc.
  • Creation of a stable environment that will attract clinical trials.
  • Establish and provide incentives to hospitals for attracting and conducting clinical trials.
  • Operation of a Clinical Studies Department within the larger hospitals for the implementation of the relevant procedures
  • Ensuring the transparency of results and patients’ access to treatments after the research is completed.
  • Strict compliance with medical confidentiality and protection of the participants’ personal data.
  • Simplification of approval procedures and their centralized monitoring by National Drug Agency (EOF) and the National Ethics Committee
  • Improving the approval procedures’ duration, from the approval application to the competent authorities until the beginning of the study.
  • Establishment of tax incentives for conducting clinical trials.
  • Creation of incentives for scientists and researchers participating in trials.
  • Set targets for hospital and health district administrations to increase the number of clinical trials.
  • Establishment of an auditing mechanism by the Ministry of Health.
  • Publication of all clinical trial results, regardless of outcome.

According to the official data provided by the National Transplant Organization, in 2018 there were only 4.1 donors per million population (45 donors in total) and 103 organ transplants performed. In the first ten months of 2019, 53 donors were registered (4.8 per million population) and 140 transplants performed. At the same time, the European average is 20 donors per million population. In Spain in particular, the average is 33 donors. In practice, this means that in Spain, a kidney patient gets his transplant within six months from the beginning of dialysis, while in our country the average waiting period is 7 to 8 years.

The main causes of the problem are related to the lack of infrastructure, staff and transplant coordinators, as well as the inability or reluctance of the treating physicians to declare a patient braindead. These ills are compounded by the perennially insufficient funding and understaffing of the National Transplant Organization.

The obvious consequence of the long waiting period is the burden on patients’ health, who are often socially and professionally marginalized due to their need for hospitalization and medical supervision. Additionally, their families are often subject to immense expenses and are forced to move to large urban areas in order to receive the necessary healthcare services. It is estimated that 70% of the financial resources allocated to Health are spent for the treatment of chronic diseases, while the cost of the outflow of patients abroad is estimated at around 10,000,000 euros per year.

The proposals of the Greek Patients Association:

  • Strengthening the National Transplant Organization, in order to supervise the transplant units and heighten the level of transplants in the country.
  • Implementing campaigns to inform, and raise the awareness of, health professionals and ICU staff regarding tissue and organ donation.
  • Creation of National Transplant Organization mobile units to diagnose brain death.
  • Reactivation and strengthening of the institution of Transplant Coordinators.
  • Providing incentives to ICUs for tracing donors.
  • Monitoring and performance evaluation of the Intensive Care Units.
  • Raising public awareness concerning organ donation.
  • Designing public awareness campaigns for organ donation in collaboration with patient associations.

There have been significant restructuring and cost reduction efforts in the public hospital sector over the last decade, particularly due to constant deficits and inefficient management.

The implemented reforms were focused on redesigning hospital bed distribution, clinics and specialized units, but their implementation has been limited. Reforms to increase transparency, reduce procurement costs and change hospital payment systems, on the other hand, have been more successful. These reforms have streamlined hospital spending, but this didn’t necessarily result in a more efficient allocation of resources and improved services.

In this context, public hospitals in Greece remain to this day part of a complex healthcare system whose basic management principle is based on a bureaucratic model. On the other hand, a complete quality management model could effectively boost the operation of modern-day public hospitals, by achieving a more sensible management and a steady improvement of the provided health services.

The proposals of the Greek Patients Association:

  • Restructuring of the hospital sector towards improving efficiency and effectiveness.
  • Evaluation and fulfilment of the needs of Intensive Care Units as regards to available beds, personnel, equipment and infrastructure.
  • Reducing the time spent waiting for medical procedures and surgeries.
  • Eliminating under-the-table payments and dealing with hospital bed overcrowding.
  • Measures to reduce hospital infections.
  • Improve the ratio of critical-care specializations (those necessary in emergencies or life-threatening cases) such as Neurosurgeons, Vascular and Thoracic Surgeons, per Prefecture.
  • Adequate staffing of the NHS Hospitals with medical, nursing and administrative personnel.
  • Establishment of cooperation with the Hellenic Red Cross and other voluntary organizations, in order to contribute to the work of the nursing staff.
  • Cooperation of the National Center of Emergency Assistance (EKAV) Coordination Centre with private ambulance operators, which will be reimbursed by EOPYY.
  • Evaluation and fulfillment of the needs of Hospital Physiotherapy and Rehabilitation Units.
  • Improving the quality of services provided by Radiation Therapy Units.
  • Operation of Palliative Care Facilities for terminal patients, via hospitals.
  • Establishment of the participation of Patients’ Associations representatives in Hospital Boards.
  • Improved staffing of social work departments, as social workers play an important role in connecting the hospital with the patient, the community and care facilities.
  • Employment of translators to meet the communication needs of non-Greek speaking patients.

Access to comprehensive and quality healthcare services is important for health promotion and sustenance, prevention and management of diseases, the reduction of disabilities and mortality rates, and the achievement of healthcare equality for every citizen.

Universal access means to ensure that everyone has access to quality health services wherever and whenever they need them, without financial burden. This includes a full range of necessary healthcare services throughout one’s life, from health promotion to prevention, treatment, rehabilitation and palliative care, always based on a strong primary healthcare.

The proposals of the Greek Patients Association:

  • Transparent, inclusive, modernized health governance, through efficient and effective public system administration.
  • Development of a high- quality primary healthcare network throughout the country.
  • Investments in healthcare and other social infrastructure that will contribute to the mitigation of regional disparities.
  • Improving quality, enhancing safety and streamlining hospital care.
  • Utilization of innovative technologies to ensure access to healthcare services.
  • Digital modernization of the healthcare system and promotion of information technology and e-services.
  • Measures to improve the sensible use of drugs and diagnostic tests.

Rare diseases affect a small percentage of the population, meaning that they have a prevalence equal to or less than 5 in 10,000 people. Some diseases are so rare that they affect only 1 in 100,000 people. In particular, there are about 6,000-8,000 different diseases characterized by low frequency and high heterogeneity, many of which are chronic, degenerative and often lead to disabilities that severely affect health and quality of life. The symptoms are usually heterogeneous among diseases and this leads to incorrect and delayed diagnoses. Rare diseases not only affect patients, but also their families, carers and society at large. On a European Union level, rare diseases affect between 6-8% of the population, i.e. more than 30 million people.

The main concerns regarding patients’ access to these drugs are related to their high cost and the often poor documentation of efficacy and safety. However, they have a significant social value, as they improve the patients’ quality of life and expand the extremely limited treatment options of a particular rare disease. Alternative health technology evaluation protocols and decision-making policies may lead to significant distinctions in the degree of access to orphan drugs in every health system, while it attempts to find a balance between citizens’ health and the sustainability of healthcare systems.

The proposals of the Greek Patients Association:

  • Designing and implementing a long-term national strategy that will allow the development of a stable and safe environment for the employment of pharmaceutical products applied to rare, life-threatening, chronic and genetic diseases.
  • Emphasis on a timely diagnosis.
  • Reform of the existing institutional framework towards its harmonization with European standards and the purpose of evaluating and certifying Specialized Centers for Rare and Complex Diseases.
  • European-level Transnational cooperation to ensure the full and rapid access of patients to new treatments, through a “European Price Negotiation Bank” in accordance with the EURORDIS proposal.
  • Establishment of a common European clinical data and information database and transnational cooperation in health professionals’ training.

Health education is defined as the principle according to which individuals and groups learn to behave in an “appropriate” and effective way in order to promote, sustain or restore their health. The ultimate goal of health education methods is to modify one’s behavior in a positive way. Education begins primarily on an individual level. It aims to mobilize people to take measures for improving their daily living conditions, using personal interests and trends.

During the last three decades, Greeks have not benefited to the same extent from economic development and the improvement of living conditions and health care as the people of other European countries. This has led to an increasing deviation from the European standards of health index improvement. EU mortality rates are declining rapidly, while in Greece the decline is slower. This discrepancy is more due to a combination of unhealthy lifestyle (dietary standards, neglecting exercise, etc.) and a lack of a national health prevention and promotion policy, than to the lack of infrastructure, medical equipment and specialized hospital care services.

The proposals of the Greek Patients Association:

  • Increase of the population’s immunization levels through vaccination.
  • Measures for addressing antimicrobial resistance and healthcare-related infections.
  • Dealing with risk factors that affect the incidence and prevalence of many non-contagious diseases, such as obesity, smoking and lack of exercise.
  • Complete and targeted interventions for the prevention of infectious disease.
  • Implementation of awareness-raising campaigns in collaboration with patient associations.

The Patients’ fundamental right to their health data protection is a major issue in a variety of contexts, such as healthcare and research.

On the one hand, health and genetic data are considered “sensitive data” and enjoy additional protection under EU legislation. Unauthorized disclosure of personal health information may have a negative impact on a person’s private, social and professional life.

On the other hand, health data processing is crucial to the optimal functioning of healthcare services, patient safety and the promotion of research and improvement of public health.

The proposals of the Greek Patients Association:

  • Full and easy access of patients to their recorded personal data, through e-government.
  • Strengthening of the mechanisms that detect cases in which patients’ privacy is violated.
  • Implementation of personal data information campaigns for patients, which will be comprehensible to the general public.
  • Provision of special training and empowerment on the particular subject to patient associations, in order for them to impart this information to health service recipients.

The fight against discrimination is one of the outstanding principles and values ​​of the Greek Patients Association. We are committed to promoting the rights of all patients regardless of health status, age, gender, ethnicity, political and religious beliefs, marital and financial status, sexual orientation, gender identity or any other factor that could lead to exclusion or unequal treatment.

Our goal is to help eliminate any discrimination based on illness and to address inequalities in healthcare from the patients’ perspective. To this end, we promote the development and implementation of national healthcare policies, as well as in other areas such as education and employment.

The proposals of the Greek Patients Association:

  • Legislative and regulatory interventions for the protection of chronic patients’ rights.
  • Strengthening of the Healthcare Recipients’ Service Departments located in public hospitals.
  • Implementation of awareness-raising campaigns for the public and health professionals regarding the preexisting discrimination against several categories of chronic patients.
  • Developing programs for informing and empowering patients about their rights.

Adherence and compliance are both terms used to describe the extent to which patients take their medication according to instruction. Compliance is defined as the degree to which a patient’s attitude is aligned with the doctor’s recommendations. Adherence is the degree to which the patient’s attitude is aligned with the agreed doctor’s recommendations. Today the use of the term “adherence” is more often preferred, due to the emphasis on the need for agreement and that non-compliance should not be a reason to blame the patient.

Adherence to treatment is an important success factor, because otherwise there are significant human costs in terms of patient safety and quality of life. Non-adherence has significant implications in healthcare systems, both in the deterioration of treatment outcomes, unnecessary treatments and hospitalizations, and leads to loss of resources through the non-use of prescription drugs that are funded by healthcare systems.

The proposals of the Greek Patients Association:

  • Ensuring responsible patient information and promoting health literacy.
  • Making joint decisions, which means that both the doctor and the patient recognize the uncertainties of differentiated treatment options.
  • Training programs for health professionals to ensure better communication with the patients.
  • Empowering patients so they will be able to make the most informed decisions regarding their health, in collaboration with health professionals.

Adherence and compliance are both terms used to describe the extent to which patients take their medication according to instruction. Compliance is defined as the degree to which a patient’s attitude is aligned with the doctor’s recommendations. Adherence is the degree to which the patient’s attitude is aligned with the agreed doctor’s recommendations. Today the use of the term “adherence” is more often preferred, due to the emphasis on the need for agreement and that non-compliance should not be a reason to blame the patient.

Adherence to treatment is an important success factor, because otherwise there are significant human costs in terms of patient safety and quality of life. Non-adherence has significant implications in healthcare systems, both in the deterioration of treatment outcomes, unnecessary treatments and hospitalizations, and leads to loss of resources through the non-use of prescription drugs that are funded by healthcare systems.

The proposals of the Greek Patients Association:

  • Ensuring responsible patient information and promoting health literacy.
  • Making joint decisions, which means that both the doctor and the patient recognize the uncertainties of differentiated treatment options.
  • Training programs for health professionals to ensure better communication with the patients.
  • Empowering patients so they will be able to make the most informed decisions regarding their health, in collaboration with health professionals.

A comprehensive set of measures is required to combat phenomena such as the regular prescription of more drugs or longer-lasting treatments than those necessary for the patient, the excessive demand for medical tests and other treatments, the induced demand for drugs, specialized nutritional supplements, diagnostic test referrals, medical procedures and other medical means for added treatment. The same applies to manipulated prescribing.

These measures, however, should not be limited to control and enforcement mechanisms, but should also include comprehensive information and awareness-raising interventions, towards both health professionals and citizens. The role of doctors and pharmacists, in particular, is considered extremely important in the reliable and ethical use of drugs as social goods for patient relief, timely prognosis and effective treatment. This is why doctors and pharmacists should be exceptionally trained and up-to-date on the therapeutic benefits and side effects of drugs.

The proposals of the Greek Patients Association:

  • Use of e-prescription system.
  • Development and adherence to treatment protocols.
  • Creation of patient registers for all diseases.
  • Intensification of enforcement measures.
  • Supply of antibiotics from pharmacies only with a doctor’s prescription.
  • Continuous information and training of health professionals.
  • Creation of public awareness campaigns on the effects of the reckless consumption of antibiotics and polypharmacy.

The population in developed countries is aging and declining. By 2050 most of the world’s population growth will come from developing countries. Europe has been experiencing a demographic divide in recent years, with northern Europe showing relatively high fertility rates, while the south shows signs of under-fertility and aging.

Greece is in a demographic stalemate. The post-war course of Greek fertility is considered prosperous, with a particularly productive period between 1960-1980. From 1980 onwards, the national fertility rate has collapsed, peaking in 2011 when recorded births were less than deaths (negative birth-death ratio) for the first time since 1944. Indicative of the country’s adverse situation is the birth / death ratio in 2015, where deaths exceeded births by about 30 thousand.

The proposals of the Greek Patients Association:

  • Drawing up and implementing a long-term, twenty-year, strategic plan, in order to curb adverse trends, with the widest possible cross-party political consensus.
  • Generous reduction of child birth and child raising costs, by introducing specific financial measures and incentives.
  • Unhindered access to assisted reproduction services, according to international protocols.
  • Social support for working parents.
  • Financial support for large families.
  • Public awareness campaigns on the negative consequences of the low birth rate and communicating the implemented positive policies and incentives for addressing the problem.
  • Initiatives and incentives to reverse the migration trend of young people.

Clawback may be a safeguard for achieving the goal of controlling pharmaceutical spending, but by no means can it became a cure-all that would not further require the promotion of reforms for streamlining the system and maximizing its efficiency, as it is a measure with anti-developmental and misrepresentive characteristics.

The Greek Patients Association proposes a strict guideline compliance concerning drug prescription, through a mandatory, national, electronic system that will be connected to each patient’s registry, and will follow specific treatment protocols per disease category.

Furthermore, positively motivated promotion of generic drug use is also required. These incentives should extend beyond the patient, and reach the entire drug supply chain, including physicians and pharmacists. Such measures should be accompanied by a comprehensive plan to raise awareness and gradually change citizens’ attitudes and perceptions regarding the safety and effectiveness of generic drugs.

The proposals of the Greek Patients Association:

  • Increase of the public pharmaceutical expenditure limit at a percentage corresponding to GDP increase.
  • Prescribing based on treatment protocols.
  • Prescribing system connected to patient registry.
  • Campaigns about the negative effects of polypharmacy.
  • Campaigns about the safety and effectiveness of generic drugs.
  • Establishment of positive financial incentives for the preference of generic drugs.
  • Incentives for the sale of generic drugs by pharmacists.
  • Further alleviation of the patient’s financial burden, concerning out-of-pocket costs for purchasing drugs, and especially for those intended for the chronically ill, based on the criteria set in treatment protocols. In some diseases where many comorbidities occur, the financial burden remains extremely heavy.

Chronic diseases are the leading cause of death and morbidity in Europe, and studies show that certain diseases, such as diabetes and depression, will place an even greater burden on future healthcare systems.

The financial and social consequences of chronic diseases are broad and complex. They pertain to personal life, autonomy, quality of life, standard of living, work productivity and disability. As spending on chronic care increases across Europe, it accounts for an increasing proportion of public and private spending.

Many chronic diseases and conditions are associated with population aging, but also with lifestyle choices such as smoking, sexual behaviour, diet and exercise, and one’s genetic predisposition.

The proposals of the Greek Patients Association:

  • Creation of a system for the treatment of chronic diseases at primary and secondary level, with the operation of integrated care facilities.
  • Establishment and operation of non-hospital palliative care facilities for terminal patients.
  • Legislative and regulatory initiatives to address the social and economic consequences experienced by the chronically ill.
  • Further alleviation of the patient’s financial burden, concerning out-of-pocket costs for purchasing drugs, and especially for those that are chronically ill, based on the criteria set in treatment protocols. In some diseases where many comorbidities occur, the financial burden remains extremely heavy.
  • Development of treatment protocols and guidelines for all chronic diseases.
  • Access to specialized psychological support for the chronically ill and those suffering from rare diseases.
  • Legislation for the employment protection of chronic patients.
  • Revision of the guidelines for calculating and certifying disability rates, according to the severity and escalation of the disease.
  • Recognition and institutionalization as a profession, of the role of caregivers /chaperones of patients with chronic diseases and mobile disabilities. Provision of educational guidance, specialization.

Efforts to modernize public psychiatric care and mental health care, over the years, have led to gradual reforms and individual system improvements. From the asylum psychiatry with the institutional, enclosed facilities, cut off from society, we gradually progress to a different overall approach of the mentally ill, to a social- and community-oriented psychiatry and psychosocial Rehabilitation.

The national reality in the field of mental health faces numerous and complex challenges. Furthermore, integrated interventions are required, in order to meet the existing and emerging needs for mental health services, which will ensure equal access, prevent social exclusion and support the social and financial integration of people with mental health problems.

The proposals of the Greek Patients Association:

  • Reinforcement of mental health units, complete the deinstitutionalization process and make beds available for acute psychiatric cases in general hospitals.
  • Creation of geriatric units and care facilities for patients with dementia.
  • Accelerate the operation of medically supervised injecting rooms.
  • Development of guidelines for handling acute cases, and the treatment and care of patients under involuntary hospitalization, pursuant to article 69 and their treatment follow- ups.
  • Establishment of audit and patients’ rights protection committees in every mental health unit, with the participation of members of Mental Health Associations.
  • Creation of emergency services in general hospitals, with specialized personnel, to ensure de-escalation in critical cases.
  • Implementation of the current legislation regarding involuntary hospitalization and all the deadlines set by Law 2071/12, and now also in accordance with Articles 12, 14, 15, 16, 17, 22, 25, and 28 of the Convention on the Rights of Persons with Disabilities.
  • Individualized assessment of the apparently mentally ill patient’s ability to make their own medical decisions, pursuant to Article 12 of the Convention on the Rights of Persons with Disabilities.
  • Training of all health and mental health professionals regarding the human rights of people with mental health issues, according to the provisions of the Convention on the Rights of Persons with Disabilities and the relevant WHO guidelines (WHO Quality Rights), in collaboration with Mental Health Associations.
  • Provision of personalized information to all patients with mental health problems about all their human rights, including the right to appeal against an involuntary hospitalization ruling, and in collaboration with Mental Health Associations.
  • Facilitate the supported decision-making of patients and their communication with patient advocates, during the course of their treatment, now under the scope of Article 12 of the Convention on the Rights of Persons with Disabilities and through Mental Health Associations.
  • Ensuring effective access to the justice system, without prejudice, with an effective monitoring mechanism and by ensuring effective access to legal services and the provision of free legal aid to all involuntarily treated patients, according to Article 13 of the Convention on the Rights of Persons with Disabilities.
  • Regulating the mandatory transport of apparently mentally ill patients by specially designated EKAV vehicles and the subsequent training of these vehicles’ crews for the safe transport of the apparently mentally ill, with appropriate respect for their dignity and personality.
  • Training Hellenic Police officers about suicidal cases and the provision of emergency psychiatric intervention, in collaboration with the Mental Health Associations.
  • Reinforcement of Mobile Mental Health Units located in remote areas, away from the urban centres.
  • Establishment of house calls and crisis intervention to be performed by multidisciplinary community groups throughout the country.
  • Creation of housing facilities in all regional units and support of autonomous and semi-autonomous living facilities by EOPPY.
  • Creation of social inclusion and vocational rehabilitation facilities in every regional unit with the cooperation of Mental Health Associations.
  • Development of guidelines concerning the treatment of acute cases, the method of treatment and care of patients treated under article 67 involuntary treatment status, and the follow-up treatment.