Freedom of movement and the right to an equitable access to healthcare within the E U

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU Access to healthcare is a basic human right and one of the fundamental principles of European health systems, together with safety, quality, and equity. Treatment should be accessible to every patient who needs it, not only to those who can pay.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU The European Court of Justice has embarked on a policy of strengthening the rights of EU citizens to obtain treatment in other Member States. Is it true that patients are the direct beneficiaries of the Court´s rulings on healthcare.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU So… We live in a V(volatiliy)U(uncertainty)C (complexity) A(ambiguity) world but… “We must adjust to changing Times and still hold to unchanging Principles”

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU Disparities in access to healthcare predate the financial crisis in Europe, but against a background of austerity measures and falling healthcare spending in many Member States since 2009, inequalities have been made worse. (health at glance, 2018, OCDE) Access to care is affected by austerity policies in response to the economic crisis, such as cuts in healthcare budgets and in insurance coverage, increased fees and co-payments, and cuts in social protection measures. (we have a lot of health models in Europe)… All this comes at a time of even greater demand for healthcare and social support.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU At the same time, healthcare systems are facing increasing demands as a result of demographic change. As the population ages, the number of patients with chronic diseases is growing. Many diseases become more prevalent with age and though some are preventable to some extent, others are not. Patients who developed a chronic disease at a younger age are also living longer, thanks to modern medical treatments. Patients with chronic diseases develop specific needs which the healthcare systems need to adapt to.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU The economic crisis has affected strongly our society. Millions of people have lost their jobs, and their security and well-being have been negatively influenced. The crisis has also put health systems under severe pressure while they are already facing the pressure of growing demand for healthcare due to an ageing population, among other issues. Access to quality healthcare is a basic EU citizen’s right – yet it is still not a reality for all of us, a situation made worse by the economic crisis.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU What are the major challenges to the health systems? Epidemiologicalanddemographictransitions HealthSystem Technologicalinnovation Professionaldifferentiation Populationdemands

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU Health inequalities carry a significant economic as well as personal cost. In the current policy debate, the economic argument “health is wealth” is now widely accepted. Investment in health is an investment in our fundamental values, in social cohesion, and in economic development. Reducing health inequalities is crucial for the overall health and wealth of society.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU But in the end… “If you believe that health is expensive, try disease”

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU And so… Patients’ access to healthcare is a key priority for the European Patients’ Forum, as highlighted by the second goal of the strategic plan 2014-2020: To contribute to improvements in health systems that enable equitable access to sustainable and high-quality healthcare designed and delivered to meet patients’ and informal carers’ needs at all levels of care, embracing innovation in all its forms. Health equity is part of the European core values: every patient should have equitable access to patient-centred high-quality health and social care.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU The new paradigm of health care Home Work Primary Episodic Managed Home care Medicine care work (acute care focused) Earlydiagnostic Chronic patients monitoring Continuous medicine (acute and chronic)

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU I just want to take a minute to look at the word: ACCESS and the real significance… The given picture of access to healthcare through existing indicators often fails to reflect the experience of patients and to give a comprehensive picture. Access is a multi-dimensional concept and currently there is not one universally accepted definition. Patients diagnosed with chronic diseases and long-term conditions are in a vulnerable position due to the effects of the illness itself, which are often very serious and disabling. These effects also have a physical, psychological, and emotional impact on the person, their family, and their immediate environment. Patients are dependent on having timely access to safe, high quality, integrated, and continuous healthcare, and other related support services. Patients are more frequently in contact with the healthcare system and have expertise on gaps and barriers in accessing healthcare. They often have a global perspective from primary to secondary health and social care, encompassing their needs for various services and healthcare products.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU Patient organizations have collective expertise in identifying access barriers and good practices. Therefore, it is crucial that decision makers and researchers, when designing or adopting indicators, take into account the patients’ perspective on what access to healthcare means. In order to encourage the definition of more accurate indicators that reflect the experience of EU patients, we believe it is important to arrive at a common definition of access which identifies the dimensions of access to healthcare that are crucial to patients.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU A patient-led definition is essential in order to set objectives to improve access to healthcare in the EU that are relevant to patients who are affected and bear the cost of health inequalities and access barriers. This paper is also supporting the European Patients’ Forum contribution to the Patient empowerment.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU EU Health at glance… some numbers

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU Life expectancy at birth measures how long, on average, people would live based on a given set of a specific death rates. However, the actual age-specific death rates of any particular birth cohort cannot be known in advance. If age-specific death rates are falling (as has been the case over the past decades), actual life spans will be higher than life expectancy calculated with current death rates. The methodology used to calculate life expectancy can vary slightly between countries. This can change a country’s estimates by a fraction of a year. To calculate life expectancies by education level, detailed data on deaths by sex, age and education level are needed. However, not all countries have information on education as part of their deaths data. Data linkage to another source (e.g. a census) which does have information on education may be required (Corsini, 2010).

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU It is very important to analyze the indicators related to the resilience of health systems, defined as the capacity of health systems to adapt efficiently to changing economic, technological and demographic environments. Digital technology offers great opportunities to deliver health services more efficiently, and the European Commission supports a digital transformation of health systems to empower citizens to have access to their health data and to promote exchange of health data among health care providers across the EU. The use of eHealth and ePrescribing continues to grow in many EU countries, although some countries are lagging behind.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU The ageing of the population requires profound transformations in health systems, from a focus on acute care in hospitals to more integrated and people-centred care in the community. Many EU countries have begun this transformation over the past 15 years – for example by reducing the average length of stay in hospitals and promoting a greater use of day surgery combined with follow-up care, but the process still requires ongoing, long-term effort. Population ageing means not only that there will be growing needs for health care in the years ahead, but also growing needs for long-term care. The latest projections from the EC confirm that public spending on long-term care is projected to grow faster than public spending on health care over the coming decades, highlighting the importance to find more innovative ways to respond to health care and long-term care needs more efficiently.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU Health care that is safe, effective, timely, efficient and patient-centred relies on the right information reaching the right person (or organisation) at the right time. A digitalized information infrastructure that ensures timely and reliable sharing of clinical and other information can improve health outcomes and efficiency, and also create a repository of valuable data for researchers and system managers (OECD, 2017). Enabling people to access, and interact with, their electronic medical record (EMR) is an important feature that can help people become more involved in their health and their care.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU The European Commission’s Digital Single Market Strategy includes three pillars to improve the health and care sector across the EU: 1) to secure access to and sharing of personal health information across borders, with the intention of going beyond ePrescriptions and patient summaries and establish full interoperability of member states’ EMRs and a European exchange format for electronic records; 2) to connect and share health data to enable research, better diagnosis and improved health; 3) to strengthen citizen empowerment and individual care through eHealth solutions and new care models (European Commission, 2018).

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU PORTUGAL (1) General context Patients’ rights are of growing importance in Portugal, also due to increasing interest from the media in cases of medical malpractice. A special law on the rights and duties of the Health Care System beneficiaries was adopted in 2014 (Law no. 15/2014), which is complemented by professional ethical codes and administrative rules from the Study on Patients’ Rights in the European Union Despite the growing attention and monitoring by the regulatory health authorities the level of implementation at the level of healthcare institutions may still seem weak. Also the judicial system seems to be hesitant as to sanctioning violations of informed consent or enforcing medical liability. A similar reluctance is observed about applying consumer protection law to healthcare situations. (1) Source_Patients Rights is European Union, 2016

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU Self-determination & confidentiality The right to consent is anchored in the constitutional right to physical and psychological integrity and in the Basic Law of Health Care. Verbal consent is more common, but such consent should always be recorded in records. Several situations require written consent, including voluntary termination of pregnancy; realization of invasive procedures in pregnant women, voluntary sterilization, medically assisted procreation (MAP); the installation of anticonception devices, blood and organ donation, research, off-label prescriptions and many others. There is a right to be informed about one’s condition, possible treatment plans and the expected development of one’s situation. There is a right not to know. The general rule is that the patients should be encouraged to participate in decisions regarding their health. There are no specific cross-border patient provisions. In terms of enforcement, there are no specific procedures; lawsuits and disciplinary action are the only avenues of recourse.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU Self-determination & confidentiality A right to privacy is the established in Article 26 of the Constitution and in Article 80 of the Civil Code; the Personal Data Protection law is also relevant, as are various specific laws (Law on Clinical Trials, Law on Medically Assisted Procreation, Law on Personal Genetic Information and Medical Information, and others). There is a legal obligation to respect confidentiality, which flows from article 195º of the Portuguese Criminal Code. The Ethics Code of the Medical Association (article 85th and following) also imposes responsibilities. There are no specific cross-border patient provisions. The right to access records is present in soft law, in the Oviedo Convention (which is applied in Portugal as national law), the Law on Protection of Personal Data and the Law on Personal Genetic Information and Health Information. In private health care units, there is an indirect access system to records (via practitioner), whereas in public health care units, there is a direct access system. In the public sector the Law on Access to Administrative Documents applies and in the private sector the Law on Personal Genetic Information and Health Information and the Law on Protection of Personal Data) apply. There are no specific cross-border patient provisions.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU Quality & safety The guarantee of quality is, from the very beginning, constitutionally granted at the subparagraph (d) of paragraph 3 of article 64 of the Constitution of the Portuguese Republic which establishes that in order to ensure health protection, the state should regulate and supervise business and private forms of medicine, articulating them with the national health service, in order to ensure adequate standards of efficiency and quality in the institutions of public and private health. There are very clear rules regarding the licensing of private healthcare units since 2009. The Decree-Law no. 279/2009 establishes the legal regime of opening, modification and operation of these units. In procedural terms, the opening and operation of private healthcare units depends on the registration in the Regulatory Authority of Health and the license issued by the Regional Administration of Health that through the licensing and the subsequent supervision control the quality of the provided healthcare. In accordance with Law 15/2014 the user/patient of health services is entitled to receive the healthcare he/she needs in a promptly way or in a period of time considered clinically acceptable.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU Quality & safety If the healthcare abroad in question can be provided in Portugal within a useful term from a clinical point of view, having regard to the state of health and the probable evolution of the patient disease. if the patient is exposed to a safety risk that may not be considered acceptable, having regard to the potential benefit of cross-border healthcare for the patient; be If there is a reasonable certainty to conclude that the population is exposed to a considerable safety risk as a result of cross-border healthcare; c If the healthcare in question are administered by a healthcare provider that will inspire serious and specific concerns regarding to compliance with the standards and guidelines of healthcare quality and patient safety; Besides possible complaints to the Health Regulatory Authority and the General Inspection of Health Activities, as well as disciplinary procedures and lawsuits there are no specific procedures.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU Choice Patients have the right to choose services and healthcare providers depending on existing resources in accordance with the rules of organization (Article 2 of Law no. 15/2014 and the law on Foundations of Health). This right is also considered as a fundamental principle of the relationship between the patient and the practitioner in the Code of Ethics of Medical Association (art 40). While choice of provider is greater for those covered by a health subsystem or private health insurance, patients in the national health service (NHS) have to register with a GP either in a public primary care centre or in a private providers contracted by the NHS. Their choice is limited to the available providers within a geographical area based on their residence. People may change GPs at any time if they apply in writing, explaining their reasons, to the Regional Health Authority’s board (RHA). For secondary specialist care a referral is needed.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU In practice, patients bypass their GP by visiting emergency departments. Frequently, there is a delay in obtaining a consultation depending on the specialty. Just as free choice the right to second opinion, although included in the Charter of Patient Rights and Duties of the General Directorate for Health (point 7), remains rather theoretical. As a way to increase choice for patients in the NHS the “dental voucher” was established in 2008 specifically designed for dental care, where the public sector is residual. Pregnant women have access to three “dental vouchers”, which give them the right to schedule a dentist appointment. The elderly are entitled to two of these vouchers per year. They were the first groups to benefit from this measure, and since then it has been expanded to children with DMFT in permanent teeth, when referred by their primary care physician. While there is no specific legal obligation the Health Regulatory Authority and the General Inspection of Health Activities provide some information on healthcare provider, including information on available services and reports on quality of care. Data on the waiting times for specialist care and diagnostic services are not available. The Ministry of Health also developed a health portal in 2011 and since 2007 an NHS call centre (“Saúde 24”) was. Also patients' organizations play an important role in informing and guiding patients.

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU • Chalenges for the Future inorder to Build a real right to equitableaccess to healthcarewithinthe EU: • Data Protectionandthenew legal frame; • Indicatorsthatreallyallowpatientschoiceandempowerment • Guaranteethatpeoplehave real access_notonlyin “papper” • Changeshouldbedrivenbythelessons of thepastandthecurrentneeds, namelythepatients • Onemilliondollarquestion: willthemoneyfollowthepatientwherever ou whenever?

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU How to “predict” and prepare for the future? • Looking at the present, based on the past • Identifying trends • Predicting the possible developments • Designing a plan

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU Some ideias to design a plan: • What are the key areas to consider in predicting the future? • What is the present situation? • Can we identify a trend? • What are the most possible future changes or scenarios? • What do we need to improve on?

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU But the real question is… From the angle of the expert on healthcare: HOW DO I CHOOSE THE HEALTHCARE PROVIDER FOR THE ONES I LOVE? And how it will be paid?...

FreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEUFreedomofmovementandtherighttoanequitableaccesstohealthcarewithintheEU • THANK YOU! • maria.barros@hospitaldebraga.pt • mariabarro@gmail.com

Freedom of movement and the right to an equitable access to healthcare within the E U