Hälsa och vård i EU samt European Patient Forum (EPF)

Funktionsrättskonventionen i EU 2018 fokuserade EU:s Work Forum på: Hälsa, habilitering och rehabilitering i Funktionsrättskonventionen Kunskap om ens egna rättigheter https://ec.europa.eu/social/main.jsp?langId=en&catId=1137&eventsId=1326&furtherEvents= yes Det finns en Work Forum on the implementation of the UN Convention on the Rights of Persons with Disabilities in the EU and its Member States Är ett årligt möte för alla som arbetar med implementeringen av konventionen inom EU (maj 2018) The Forum brings together representatives of those responsible for implementing and monitoring the UN Convention, both at EU and national level; these are Focal Points, Coordination Mechanisms and Monitoring Mechanisms. Civil society and disabled people's organisations also actively participate in the Work Forum. This year, the Work Forum will focus on: Health, habilitation and rehabilitation in the CRPD Knowing your rights: disability awareness and training programmes The role of UNCRPD Committee

Exempel på problem som togs upp under denna konferens: Källa: https://ec.europa.eu/social/main.jsp?langId=en&catId=1137&eventsId=1326&furtherEvents=yes

Vårdfrågor som hanteras i EU Antibiotikaresistenta bakterier Rätt att söka vård i annat EU-land Läkemedel - EMA Tobak, Alkohol Sällsynta diagnoser Organdonation Forskning och samordning – E-hälsa, AI EMA – European medicines agency (London) EMA godkänner, falska läkemedel, kliniska prövningar Patientorganisationerna kliver in som informationsgivare Prostatacancerförbundet - https://medlem.foreningssupport.se/prostata/uploads/Informationscenter/PCF_att_valja_vard_161020.pdf ” För att underlätta har vi, Prostatacancerförbundet, i samråd med FK, tryckt upp en särskild folder,.” Psoriasisförbundet - ” I höst (2018) kommer vi utveckla en guide till rättigheter och möjligheter för personer med psoriasis/psoriasisartrit och då är detta ett område vi avser informera om.” Organdonation: To help implement this basic act, the Commission proposed and adopted, in close collaboration with EU national authorities, Commission Directive 2012/25/EU regarding the information procedures for exchange of human organs intended for transplantation, between EU countries. Kommissionen har också kommit med ett förslag på ett direktiv rörande organdonation. https://ec.europa.eu/health/blood_tissues_organs/organs_en Viriginia Dignum (umeå), Fredrik Heinz (SAIS) Regelverk för AI - Expert Group on Artificial Intelligence Kommissionens roll: Proposing legislation Providing financial support Coordinating and facilitating the exchange of best practices between EU countries and health experts Health promotion activities.

Bubblare Icke-smittsamma sjukdomar Statistik - Hälsotillståndet i EU Livsstilssjukdomar The Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases was formalised in July 2018 with a goal of supporting EU countries in reaching the health targets of the Sustainable Development Goals. The Commission consults the Steering Group on health priorities and strategic objectives, and on the health policy perspectives of other policies and funding mechanisms. Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases Health at a glance EU-kommissionens initiativ ”Hälsotillståndet i EU” ska ge beslutsfattare, intressegrupper och vårdpersonal jämförbara faktauppgifter och insikter i hälso- och sjukvården i de olika EU-länderna. Initiativet består av tvååriga cykler och har utformats i samarbete med OECD och Europeiska observationsorganet för hälso- och sjukvård. https://ec.europa.eu/health/state/summary_sv

The EU should act to ensure that all patients, everywhere in the EU, have affordable, timely access to the spectrum of healthcare they need, from diagnosis to treatment, social and other support service The EU should adopt a new, comprehensive and up-to-date European legislation on patients’ rights The EU should ensure that Europe’s future digital health tools and systems start from patients’ priorities and are co-developed with patients The EU should involve patients meaningfully in all EU-funded projects and programmes, working with patient organisations to set ground rules for research involvement and compensating patients for their expertise The EU should ensure meaningful patient involvement in all parts of health systems, by working with the patient community to share learning and support the implementation of good practices 1 Eliminate all forms of discrimination, including that encountered by patients in healthcare and everyday life Equitable access boosts growth and contributes to a society that is prosperous, productive, inclusive, and fair – it also requires political and financial investment in society Even people who are not healthy have much to contribute to society. Patients can reach their individual potential when they have timely and affordable access to the full spectrum of care and services, based on need not means. 2. All patients have the right to define their own goals and participate as equal partners in care Patients want to live a normal life; and only each patient can define what “normality” means for them Every patient across the EU deserves to benefit from empowering care practices and a culture of partnership, including shared decision-making and self-care support Different levels of empowerment depending on where you live are a specific inequality in the quality of care – a health inequality 3. Digitalisation in healthcare should lead to better quality, safety and sustainability of care – but also transform care into a much more participatory process Digital tools should start from the needs of healthcare users and be developed with the users, to ensure technology leads to better outcomes for patients and for society Patients are also the owners of their health data and should be able to access it, decide who to share it with, and on what conditions EU actions on new technological developments should always involve patients and patient organisations as true partners 4. Research should be driven by patients’ real-life needs and priorities Meaningful patient involvement in research is critical to produce valuable innovation More research for non-pharmacological approaches to care: patient-centred care models, supporting implementation of good practices Transparency of research results and lay-friendly information on scientific research  empower patients with knowledge, increase understanding of the benefits of research and help (re)create trust in science 5. Healthcare urgently needs to change  person-centred, participatory Empowered patients are partners in improving care quality, from self-management support through shared care planning to service evaluation and (re-)design Patient organisations contribute the unique perspective of patients and their contribution should be valued and resourced at national and EU levels

Annual General Meeting 2018 – Marie Steen 2019 – Marina Kostas Aligiannis, e-hälsonätverket. Universal Access to Health Care We call for strong EU health policy, political leadership, effective coordination and addressing what is important Most EU citizens want “more health in EU and more EU in health”