Ce diaporama a bien été signalé.
Le téléchargement de votre SlideShare est en cours. ×

PowerPoint Presentation +.ppt


Consultez-les par la suite

1 sur 45 Publicité

Plus De Contenu Connexe

Similaire à PowerPoint Presentation +.ppt (20)

Plus récents (20)


PowerPoint Presentation +.ppt

  1. 1. ENSURING COMMUNITY CARE IS PROVIDED IN CLOSE COLLABORATION WITH CITIZENS AND COMMUNITIES @eupatientsforum 24-26/09/2017 The Citizen Voice in Primary Care; a social commitment to 'health for all’! Nicola Bedlington Secretary General
  2. 2. • About EPF • Patient empowerment in a community setting? • Health literacy: a cornerstone of empowerment • What can digital health contribute? • Patient involvement: why it matters • Inclusiveness- leaving no-one behind • Conclusions Overview
  3. 3. • European Patients’ Forum – Umbrella organisation – Active since 2003 – Independent & non-governmental – EU patients’ voice • Our members – 74 patients’ groups – Disease-specific EU & national coalitions About EPF
  4. 4. Our Vision! “All patients with chronic conditions in Europe have equal access to high quality, patient- centred health and related care.” Mission and vision Our Mission! “to be the collective, influential patient voice in European health and related policies and a driving force to advance patient empowerment and patient access in Europe.”
  5. 5. Chronic diseases account for up to 80% of healthcare costs in terms of premature deaths, healthy life years lost, and lost productivity (OECD, 2016) Chronic diseases Multimorbidity is increasing at a significant rate and poses a particular burden on patients and families, as well as specific challenges to healthcare delivery and organisation (Business and Industry Advisory Committee)
  6. 6. Demographic ageing in Europe is leading to a growing incidence of age-related diseases, a growing demand for care and a serious sustainability challenge for our social and health care systems. Recent research -80% of the care provided in Europe today is actually provided by families and friends. Care will be more effective if patients and their carers are perceived as partners in care and are involved in the decisions that affect them all along the care pathway. Patients and carers
  7. 7. Hospital & health system Social insurance system School system Social network Other GP Specialist Physio Psychologist Personal assistance Medicines Pharmacist Pre-school Special school School nurse Neighbours Relatives Friends Spouse Siblings Home adaptations Housing Equipment Employer Colleagues Patients’ needs at the centre
  8. 8. Empowerment
  9. 9. Our definitions of empowerment “A process that helps patients gain control over their lives, increasing their capacity to act on issues that they themselves define as important” (Adapted from JA-PaSQ, 2012) A process: non-binary, non-linear Cannot be imposed from top-down Individual + Collective “A process through which individuals and groups are able to express their needs, present their concerns, devise strategies for involvement in decision-making, and take (political, social, and cultural) action to meet those needs” (PaSQ, adapted from Duque project http://www.duque.eu/ )
  10. 10. EMPATHIE: 3 facets of empowerment MACRO level MESO level MICRO level Virtual communities Good practices standards Patient rights-laws Technical skills Group information sessions Incentive based systems SHARED TREATMENT DECISION MAKING HEALTH LITERACY SELF- MANAGEMENT Strategies of PE addressed to PROFESSIONALS Strategies of PE addressed to PATIENTS Normative standards Monitoring performance Curricula models Decision aids Web based Interventions Patient-professional relationship interventions Communication skills Virtual personalized support Providing information Multidisciplinary teams Behavioral change support Self-efficacy interventions Emotional and psychological support • Health literacy – Information, ICT tools, system factors… • Self-management – Skills, behaviours, self- efficacy, psychological- emotional support… • Shared decision-making – Relationship – Decision aids – Communication – HCP skills, attitudes… EMPATHIE study, final report (2014) available at http://ec.europa.eu/health//sites/health/files/patient_safety/docs/empathie_frep_en.pdf
  11. 11. 01 Education. Making informed decisions with the right information and support. 02 Expertise. Patients’ unique expertise derived from lived experience is a valuable resource. 03 Equality. Equal partnership between patients and professionals. 04 Experience. Patients’ organisations channel the patient community’s collective voice. Equality Experien Education Expertise 05 Engagement. Patients as well as the whole society for better health services and policy. Engagement → Patients prescribe E5 for Better Health Systems! Campaign on Patient Empowerment Link to the campaign: http://www.eu-patient.eu/campaign/PatientsprescribE/
  12. 12. EPF Patient Empowerment Campaign • Patient’s Charter • 10 fundamental principles of patient empowerment • Can be applied to local context or national healthcare system • Roadmap for Action • Propose concrete actions Supported by: and by unrestricted grants from GSK, Amgen and MSD.
  13. 13. • Gives direction and inspiration, rather than a prescription • Takes a long-term view • Who should act? All relevant stakeholders in each area • Need to develop a new, collaborative mind-set to cut through existing “silos” and develop solutions together – always with patient organisations as partners The Roadmap for action Identifies priority areas for further action 1. Health literacy & information 2. Professional training & skills 3. Self-management support 4. Patient-driven technology solutions 5. Patient involvement in patient safety 6. Patient centredness in healthcare 7. Patient involvement across the R&D lifecycle 8. Patient involvement in health policy
  14. 14. “Integrated” = person-centred www.nationalvoices.org.uk/ For a patient/carer “integrated” means person-centred, coordinated care
  15. 15. • Shared decision-making is an intrinsic part of patient empowerment • HCP want to develop their “soft skills” further (shared decision-making, listening, supportive and effective communication, empathy and partnership) Primary care Need for evolution of healthcare professionals’ training Primary care and community care are particularly important environments for professionals to develop such skills further because of their close contact with patients (often “case coordinators”)
  16. 16. • Shared decision-making, self-management • Health professionals’ knowledge, skills, attitudes: • Patient as active and equal partner • Communication • Knowing how to listen, elicit preferences • HCP need to work in a team with others A fundamental shift in medical culture From paternalistic to partnership HCP education and training The patient-professional relationship
  17. 17. Example: “lay-friendly” clinical trial results
  18. 18. Example: “lay-friendly” clinical trial results • Patients may read information online that they will want to discuss with their healthcare professional; • The professionals also need to familiarise themselves with the information sources that patients use. Professionals will need to engage in a proper discussion on what the information means before any meaningful decision can be (jointly) made
  19. 19. Health Literacy
  20. 20. • Self-management is one of the aspects of patient empowerment (along with shared decision-making) • Both aspects are highly relevant in a primary care context • health literacy is a vital skill that patients and professionals! Health literacy Why is it important? Need to have to optimise the interaction between patient and provider.
  21. 21. What is health literacy? “people’s knowledge, motivation and competences to access, understand, appraise, and apply health information in order to make judgments and take decisions in everyday life concerning healthcare, disease prevention and health promotion to maintain or improve quality of life during the life course.” (Sørensen et al., 2012) • Encompassing literacy skills • But also the capacity to judge • and to take action based on your judgement.
  22. 22. Low HL makes it difficult to… Vulnerability factors include: low education, low perceived health, low social status, low financial status, age 76+, long-term health condition… … but even highly educated people can have inadequate HL Understand a vaccination chart Fill out a medical form Find the right treatment Maintain healthy lifestyle Read a medicine information leaflet Understand & act upon medical advice
  23. 23. Low HL has a health & economic impact Low health literacy associated with: • Less use of preventive services • Poor management of chronic conditions • Higher mortality • More medication errors • Misdiagnosis due to poor communication between providers and patients • Low rates of adherence to treatments • More hospital readmissions Cost of low health literacy can be 3-5 % of total healthcare costs at health system level (“The Costs of limited health literacy: a systematic review”, Eichler K, Wieser S, Bruegger U, Int J Public Health, 2009; 54(5):313-24)
  24. 24. Being health literate empowers people Being health literate enables people for example  HL is a key dimension of patient empowerment (EMPATHIE, 2014)  HL is essential for health systems that are equitable, high quality and patient-centred (WHO, 2013)  More advanced concept of HL as a key enabler of societal participation and overcoming structural barriers to health (Nutbeam, 2000) To understand information about their health To evaluate information for its quality and trustworthiness To make more informed decisions To reflect on and explore alternative options
  25. 25. European research showed that… European Health Literacy Study (HLS-EU), 2012 0-25 Points >25-33 Points >33-42 Points >42-50 Points Across 8 European countries, nearly 1 person in 2 had limited health literacy – not only vulnerable groups
  26. 26. Health literacy: a system challenge
  27. 27. Digital Health
  28. 28. Facilitates chronic disease management, self- management And leads to improved quality of life Added value in terms of improved adherence to treatment Patient empowerment and involvement in the care process as equal partners with HCPs Patient centred care as opposed to disease centred and better integration of healthcare Information, Health literacy Patients’ expectations of digital health care
  29. 29. • 92% of patients are willing to play a more active role in managing their own condition • 60% of patients (and 70% of HCP) would be willing to use eHealth in the short-medium future • … but only 48% think they are ready to handle the additional responsibilities presented by eHealth • Similar trends for HCPs Some figures… Do patients want to be more empowered?
  30. 30. • European Federation of Allergies and Airways Diseases’ Patient Associations (EFA) • Partner in the EU project “myAirCoach” • Aims to support asthma patients to control their disease through mHealth • Advisory Patient Forum - formed of 22 asthma patients, to make sure that the system under development addresses their needs My Air Coach
  31. 31. • Dystonia Europe developed the MyDystonia app for patients • MyDystonia: an electronic diary created for people with the neurological disease Dystonia • By answering predefined questions (e.g. symptoms like overactive muscles or pain) the user is able to examine his/her well‐being according to the treatment schedule • Led to improved patient-HCP communication and treatment outcomes • The App was initiated, designed and developed by patients for patients. Dystonia Europe has 100% ownership of the project and the app is currently being rolled out in 10 countries My Dystonia App
  32. 32. • Need to acquire thorough understanding of patients’ needs and perspectives, with patients at the centre of digital health and care design • Ensure that the digitalisation of health and social policies and systems is accompanied by strategies for strengthening health literacy and patient empowerment Patient-centred digital technologies: privacy by default and accessibility (including affordability) and design for all Meaningful Patient Involvement
  33. 33. Digital health has been a policy priority for EPF over the last 7 years with the following objectives: 1. To acquire thorough understanding of patients’ needs and perspectives on digital health 2. To ensure that digital health services are designed, assessed, and implemented in a patient-centred way and ensure that eHealth policies and programmes effectively enable and promote patient- centeredness. 3. To ensure that implementation of digital health services is accompanied by strategies for strengthening health literacy and patient empowerment EPF digital health policy objectives
  34. 34. Patient involvement
  35. 35. Patients have a specific expertise derived from simply being patients, which is a valuable source of experiential knowledge. Meaningful patient involvement What does it mean? How can patients be involved? PatientPartner FP7 Project (2010), www.patientpartner-europe.eu
  36. 36. Patient involvement What is needed? Sustainable and scaled-up patient involvement are needed: this requires resources and support (including communications and administrative support) from various local stakeholders There is a need to define better what is “good” practice in patient involvement from the patient perspective Too often patients’ feedback on one-off issues is sought, rather than their influential involvement in the broader context
  37. 37. Mission: Empowering patients for their key role in health-related research Public Research Ethics Committees Competent authorities Policy makers /Research Policy HTA agencies & committees Research subject Info provider Advisor Reviewer Co-researcher Driving force Clinical Research demographic ageing
  38. 38. • Build on our ‘assets’ to date – Value +; – EPF Charter and Roadmap on Patient Empowerment; – PROSTEP, PISCE , EMPATHIE. Meaningful Patient Involvement • Develop a patient-led framework on good practice on patient involvement – Recommendations – PI as a ‘sine qua non’, added value; – Support adoption of good practices: co-design and evaluation of healthcare, health research, patient-driven technology solutions.
  39. 39. Inclusiveness
  40. 40. To combine those goals we developed the “roadmap towards inclusion of vulnerable groups’ perspective within patients’ organisations” Vulnerable Groups What does EPF do? Inclusiveness and non-discrimination is a core value of EPF EPF also helps build sustainable patient organisations Focus on: Undocumented migrants, LGBTI, Roma, Homelessness, Disabilities
  41. 41. • Goal 3: Ensure healthy lives and promote well-being for all at all ages • Key target: achieve universal health coverage by 2030, including financial risk protection, access to quality essential health-care services and access to safe, effective, quality and affordable essential medicines and vaccines for all UN SDGs - The Road to Universal Access in the EU by 2030 Universal health coverage is an important way of tackling health inequalities – patients and citizens will not make use of primary or community care if the co-payments are too large
  42. 42. Campaign’s strategic objective: The EPF Access campaign will contribute to making universal access a reality for EU patients by 2030, through defining and promoting concrete actions, in concert with the health community, to which decision makers need to commit, to ensure we achieve the Health SDG by 2030 Campaign’s Strategic Objective
  43. 43. Conclusion: From doing “to”… “Patient-centred care”… … to doing BETTER WITH patients! “I am the most important member of my care team”
  44. 44. • Chronic diseases affect a large part of the population • In order to achieve better healthcare also in community setting- patient empowerment is vital • A change in attitudes of healthcare professionals but also health literacy for patients • Digital technologies can be a great enabler • Inclusiveness and non-discrimination is a cross- cutting issue Conclusions
  45. 45. THANK YOU www.eu-patient.eu