Cochrane Colloquium 2008 - Plenary 1

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

4. When you have a rare condition > 40 contacts
Specialist-
Arbets- vård
BB terapeut Sjuk-
gymnast
Primär-
BVC
vård Tjänsteman
Healthcare
Vänner Nämnd
Anhöriga
Social Insurance
Network
Grannar Försäkrings-
kasseläkare
Other Arbets-
Work/ kamrater Arbets-
LSS authorities givare
School
Grund-
Bostad- Förskola Arbets-
skola
anpassning förmedling
Hjälp- Särskola Skolsköterska
medel

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

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

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. 53.4. Sid. 392-402, 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 13.000 SEK/ year
• Attended ordinary program – consumed for 35.000
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

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.

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 Information
@
www.eu-patient.eu
www.agrenska.se