VARFÖR MANGLAR PATIENTEN?./.

Transkript

1 VARFÖR MANGLAR PATIENTEN?./. ETT NATIONELLT EUROPEISKT OCH GLOBALT PATIENT PERSPEKTIV 24 November Trondheim, Norway Anders Olauson, Honorary President European Patients Forum Chairman, Agrenska, Sweden

2 1. Varför är inte patientens perspektiv den normala utångspunkten? 2. Vaför tror vi alla inom helsetjensten att vi vet vad patienterna behöver? 3. Varför helsetjensten I alla länder släpar efter, och är reaktiv I stället för att vara proaktiv?

3 Mina utsiktsplatser..

4 För att förstå hur det är att ha ett barn med funktionsnedsättning, så måste du ha ett barn med funktionsned-sättning själv! Åke Martinsson, Sweden

5 Roger, My teacher!

6 Dagens Ågrenska startade genom en unik samverkan mellan; Sjukvården, Skolan, Socialtjänsten, Patientorganisationer Ågrenska Stiftelsen

7 Agrenska a centre for people with disabilities, their families and professionals Queen Silvia Patron of Agrenska Sw. Mrs. Ilves, Patron of Eesti Agrenska

8 Patientens verklighet Familjen, barnen, ungdomarna, vuxna, anhöriga

9 Familjens verklighet?

10 The reality for a lot of families > 40 to 120 contacts Work/ occupation and Social network Neighbours Collegues Friends Employer Relatives Hospital Psychologist? GP Birthdepartment Physiotherapist Neurologist Personalassistans Medicines Social- insurance system Home equipment and adaptations Other authorities Housing -support Technical support Juniorschool Specialschool Schoolnurse Preschool School Respite care

11 Ågrenskas program Family Program Adult Program Education Respite care Personal assistance Daily occupation The Agrenska Academy research National Agency for Rare Diseases International work Lobbying All our programs have been planned in cooperation with representatives from authorities patient organisations

12 Arbetskamrater som själva har en funktionsnedsättning

13 Några reflektioner efter mer än 26 års erfarenheter familjer säger; 1. För få inom proffesionen har kunskap om min diagnos och dess inverkan på migily 2. Insatserna är antingen ofullständiga eller fel 3. För lång tid innan diagnosen blev ställd onödigt lidande 4. Fel del av systement får betala notan 5. Samhällets insatser är inte koordinerade kompetens om systemet saknas jag själv måste vara den som blir kunskapsbäraren 6. Jag vill prata och fokusera på möjligheter snarare än problem 7. Jag måste alltid förklara och försvara mitt barns svårigheter pga diagnosen och omgivningens ointresse 8. Jag behöver möta andra som har det som jag i olika faser av mitt liv

14 The Agrenska Academy forskning och utveckling Inventory of social science Scientific council Interdisciplinary and holostic perspective Pedagogic Social science Psycologic Ethnologic Socioeconomic Medical Orofacial Mfl. Rare Foundation

15 Stenhuset Invigdes 21 Juni 2016

16 Room of the future Virtual Reality Studio For our kids to get the possibility to

17 Room of the future Virtual Reality Studio do things that otherwise had been impossible and give them a chance to

18 Room of the future Virtual Reality Studio explore the future

19 Andra instanser av betydelse

20 Ministers of Health

21 Commissioners for DG Sante in the EC from Carlos Moedas Commissioner for Research, Science and Innovation

22 Min utsiktsplats Ågrenska, ordförande EPF, president Eesti Agrenska, ordförande EC, DG Research, advisory council member UN ECOSOC, special consultative status EURORDIS, fd. President och styrelseledamot mm.

23 International work and cooperation = UN, ECOSOC members + CfRD = Cooperation = Ågrenska part in establishment/development

24

25 NGO Committee for Rare Diseases (UN, NY)

26 Why the United Nations? The right place For decades, the UN has been a driver of a strong public health agenda, social development, inclusion, and progression,developments in science, technology and innovation, and human rights for all.

27 Why the United at the right time Nations? In November the UN adopted its 2030 Agenda for Sustainable Development, including the adoption of the 17 Sustainable Development Goals (SDGs). There is a clear alignment of a number of goals with rare diseases, e.g;:

28 Introducing the Committee Mission Promoting rare diseases on the global level Vision An inclusive, multi-stakeholder ecosystem to share knowledge and expertise about rare diseases and to increase global visibilityof rare diseases

29 Introducing the Committee: Composition and Members Regular Members NGOs in consultative status with ECOSOC NGOs in consultative status with other UN bodies than ECOSOC (e.g. WHO, DPI, etc) Associate Members Observer Members All other NGOs, governments, patient groups, academic institutions or civil society organisations / Non-profit only All for-profit undertakings, e.g. private sector organisations Supporter Members Individual Members Persons actively working for the benefit of people living with rare diseases, or with a noted political or academic expertise on rare diseases

30 Tillbaka till Europa Vem och vad är EPF?

31 For a strong European Patient Movement

32 Mission and vision Our Vision! All patients in the EU have equitable access to high quality, patient-centred health and social care. Our Mission! To ensure that the patient community drives health policies and programmes that affect them.

33 Our Strategic Goals Health Literacy Healthcare Access and Quality Patient involvement Patient Empowerment Sustainable Patients Organisations Non-discrimination

34 Evolution of EPF activities Influencing policy developments at EUlevel Strengthening Patients voice in the EU From 2008 EPF partnering in EU projects to gather evidence-based knowledge 2012 present Capacity Building and targeted activities for patient leaders, e.g. EUPATI Evolution from 1 to 3 pillars Strengthening policy impact

35 Our place in the EU legislative process European Commission EU umbrella patients org European Parliament Council Public consultations Draft Directive National patients organisations Draft Directive changed Health Ministers approve/reject Draft Directive Final Directive Transposition / implementation National laws in all Member States

36 Example 1: Pharmacovigilance Directive and regulation adopted in 2010 What benefits for patients? 1 - Direct Patient Reporting: Possibility for patients to report directly suspected adverse drug reactions to competent authorities 2 - Better information on pharmacovigilance to the public through the creation of national websites 3 - More effective collecting of medicines safety and adverse reactions information thanks to the development of a European database

37 Example 2: E-Hälsa ehealth in levers for change Lever for change #1: My data, my decisions Lever for change #2: Liberate the data Lever for change #3: Connect up everything Lever for change #4: Revolutionise health Lever for change #5: Include everyone Recommendations for action Recommendation I: A new legal basis for health data in Europe Recommendation II: Create a beacon group of Member States and regions committed to open data and ehealth Recommendation III: Support health literacy Recommendation IV: Use the power of data Recommendation V: Re-orient EU funding and policies

38 inom forskning och innovation

39 Genome sequencing Translational research New techniques for benefit/risk elicitation Health research & policy is changing at a fast pace HTA early dialogues Need for postmarketing data Adaptive pathways Personalised and stratified medicine (Small trial populations, Biomarkers, companion diagnostics) BUT long term pressure on health budgets here to stay Adaptive design in clinical trials

40 Limitations to patient involvement in research

41 Are there enough Patient advocates to engage in R&D?

42 EUPATI

43 EUPATI: an innovative training model An unprecedented collaboration: Patient organisations, health professionals, health tech experts, health NGOs, pharma industry Funded by IMI (PPP between EC and EFPIA) Launched Feb 2012 Runs for 5 years Consortium of 29 members led by EPF Develop & disseminate objective, credible, correct and up-to-date information on medicines R&D in 7 European languages Building competencies & capacity among patients & public to get involved Facilitate patient involvement in R&D to support academia, industry, authorities and ethics committees

44 Different education tools for different audiences EUPATI Patient Experts Training Course -- for expert patients 100 patient advocates English EUPATI Educational Toolbox -- for patient advocates EUPATI Internet Library -- for the health-interested public 60,000 + patient advocates individuals English French German Spanish Polish Italian Russian

45 Något att komma ihåg

46 1. Varför är inte patientens perspektiv den normala utångspunkten? 2. Vaför tror vi alla inom helsetjensten att vi vet vad patienterna behöver? 3. Varför helsetjensten I alla länder släpar efter, och är reaktiv I stället för att vara proaktiv?

47 Varför är inte patientens perspektiv den normala utångspunkten? Taylor Konservatism Maktfråga om man ger den enskilda människan den betydelsen

48 Varför tror alla inom helsetjensten att vi vet vad patienterna behöver? Taylor Makt Enklare Tradition

49 Varför helsetjensten I alla länder släpar efter, och är reaktiv I stället för att vara proaktiv? En mycket svårare fråga Ekonomi För kort mandatperiod Inrätta en sakkunnig som enbart har patientperspektiv i alla frågor.

50 Food for thought Förutom allt jag sagt hittills Nu tid för paradigmskifte Säkerställa patientrepresentation på ett hållbart sätt Patient reported outcome en ny väg framåt Släng ut Taylor inrätta cross-budget samverkan på regeringsnivå

51 TACK SÅ MYCKET AGRENSKA EUROPEAN PATIENT FORUM EURORDIS