A STRONG PATIENTS VOICE TO DRIVE BETTER HEALTH IN EUROPE

Transcription

1 A STRONG PATIENTS VOICE TO DRIVE BETTER HEALTH IN EUROPE

2 Evidence in the era of globalization Patients influencing research: Setting the scene right? Anders Olauson Agrenska Eurordis EPF Eesti Agrenska

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4 When you have a rare condition > 40 contacts BB Arbetsterapeut BVC Sjukgymnast Primärvård Tjänsteman Healthcare Vänner Anhöriga Specialistvård Nämnd Social Network Insurance Grannar LSS Försäkringskasseläkare Other authorities Bostadanpassning Work/ School Förskola Hjälpmedel Särskola Arbetskamrater Grundskola Skolsköterska Arbetsgivare Arbetsförmedling

5 Ågrenska Founders HSO Hospital Social care Eudcation Board of mentally retarded Ågrenska Foundation

6 In order to understand how it is to be a parent to a disabled child, you have to be a parent to a disabled child yourself Åke Martinsson, Sverige

7 Today Agrenska inagurated 1989 Anders Olauson initiater of Agrenska H.M. Queen Silvia Patron for Agrenska

8 Agrenska program Main Program: National center of competence Family program Adult program Helpline on internet Regional program Respite care Education Agrenska Assistants DAMP/ADHD konsulent Family support Job training program Staff who them self have a disability Training program Eesti Agrenska Agrenska Friends Agrenska Academy

9 Reflexion from parent s. Parent s feel normal for the first time The family feel empowered, by meeting other in the same situation Parent s get new knowledge, to take better care of their own life Children with the disorder meet other in the same situation Siblings meet other siblings

10 Adult program - Participants tell Increased knowledge increased understanding of disability and needs Enhancing own strategies Better prepared in relation to health care professionals and authorities

11 Agrenska is a Internationell Center of Competence Queen Silvia inaugurates the Queen Silvia Auditorium at Agrenska Academy in 2001.

12 Tammistu 2008 Tammistu

13 The Agrenska Academy Virtual Center for research Stimulate further and deeper research on rare diseases Build upon experiences from the Agrenska program Holistic perspective International cross boarder cooperation Make international research result available for patients Scientific council

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15 Oslo 24 April 2008

16 A empowerd patient needs selfpower Världsbanken Processen för att öka individers eller gruppers förmåga att fatta beslut och omvandla dessa beslut till önskade åtgärder och resultat. WHO - En förutsättning för hälsa och en proaktiv strategi för partnerskap och egenvård för bättre resultat på hälsoområdet och bättre livskvalitet för kroniskt sjuka

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18 Research study of the Family program Undersökningsgrupp A 136 mammor och 107 pappor (140 familjer) B 90 mammor Instrument med jämförelsedata Ågrenska Familjeverksamheten KUNSKAP REFLEKTION EGENKRAFT Före Utvärdering Efter 6 mån Efter 12 mån Tidskrift: Journal of Advanced Nursing, Vol Sid , Artikelns titel: Stress and well-being among parents of children with rare diseases: a prospective intervention study, Författare: Lotta Dellve tillsammans med Lena Samuelsson, Andreas Tallborn, Anders Fasth och Lillemor Hallberg

19 Research on the parental program More parents active and well prepared at meetings with health care professionals and more compliant at follow-up

20 Effects scientific proof: Reduced costs for healthcare Attended family program - consumed medical care for SEK/ year Attended ordinary program consumed for SEK/year

21 Educational consequences People with syndrome diagnoses often represent educational challenges

22 Broad observation instrument shows data for groups, variation within groups, differences between groups reliability considered good professor Erland Hjelmquist and docent Bengt Jansson, Göteborg University theoretical validation work remains

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24 A STRONG PATIENTS VOICE TO DRIVE BETTER HEALTH IN EUROPE

25 FIVE GOALS 1. Equal Access for Patients 2. Patient Involvement 3. Patients Perspective 4. Sustainble Patient Organisations 5. Patient Unity

26 Some of the involvement. The Pharmaceutical Forum Patient Mobility Compliance Patients Safety E-health Counterfeit medicines EPF CPME The EU Paediatric Regulation

27 EPF view is; We need broader our view on healthcare, since a disease affect all areas of life, and therefore an intervention in one area can found its best rewards in another area share cost.

28 EPF view is; We, that is EPF, is launching our Manifesto in September where we say why and how to achieve these things.

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30 Young Patient Perspective The idea was to find out what young patients think about their situation and possibilities to live and take care of themselves. What will the future look like? Job opportunities and family life? We want to find out if the societys idea of these young people are correct, or if it needs to be updated.

31 1. The systems, organizations and people that are supposed to help are regarded as enemies. Nothing comes easy. Nothing comes exactly when you need it. Nothing comes as you want it. Soon you tend to se the helping systems as enemies. Either you conquer them or you give up and adapt the system perspective. All of the patients agreed that the systems were preventing them to live as normal as they wanted. They don't like to waste the energy they have got on dealing with the systems. The systems cause energy drainage even when it provide support. You might get help but you always have to struggle, beg, be system smart to get what you need.

32 Conclusions The patient s experience is a valuable resource and should be utilised Prioritisation and clincal need Appropriate outcomes relevant to patients Patient perspective Better recruitment and disssemination Better use of resources

33 More