Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie "European Expert Meeting on Self-Help Support" The way from passive health consumers

Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie

"European Expert Meeting on Self-Help Support"

“The way from passive health consumers to active players" –

How self-help and patient initiatives are entering the health care system

Christopher Kofahl, Alf Trojan

University Medical Center Hamburg-Eppendorf

Center of Psychosocial Medicine

Department of Medical Sociology

Martinistr. 52

20246 Hamburg

[email protected]


2Alf Trojan, 2008


3

Overview

Citizen’s movements and grassroots movements in the health care sector

Action research and model-projects

Political awareness and recognition of self-help groups (SHG) and self-help organisations (SHO)

Future challenges and needs Societal trends Trends in health care


Where we are today:


5

Self-help Groups Self-help Organisations (SHO) Self-help Clearinghouses

approx. 70,000 – 100,000Self-help groups

Approx. 280 Self-help

Clearinghouses

approx. 355 on national level,number on federal state level unknown

locallevel

federalstateslevel

national level

16 offices for addiction affairs

15 self-help unions / Wor-king groups for self-help /support for the disabled

16 Working groups of self-help clearing-

houses (LAG KISS)

4 State-level

co-ordination centres

Representatives ofnational unions for

addiction aid

37 SHO in the “forum for people

with chronic diseases and disabilities”

104 HCPO for peoplewith chronic diseases and

disabilities

-----------------------------

Federal Association

SELF-HELP (BAG SELBSTHILFE)

National centre for addiction

aid (DHS)

The PARITÄTISCHEGesamtverband

(welfare organisation)

“Representatives of the leading self-help umbrella organisations” on the basis of § 20c Social Security Code V

National ClearingHouse for the

Encouragement and Support of Self-Help

Groups (NAKOS)

National Working Group on self-help groups

(DAG SHG)

Imp

act

on

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era

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ati

on

al le

vel act

ivit

ies

esp

eci

ally

in

th

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ase

of

rare

dis

ease

s

Possible development towards an SHO in the case of manifest problems and continuous self-help work

Geene, Huber, Hundertmark-Mayser, Möller-Bock, Thiel, 2009, p. 14


How it began:


7


8

Citizen’s movements and grassroots movements in the health care sector

1970’ies and 1980’ies: based on the 1968 civil commotions and students riots, Medical Crisis – Crisis in Medicine; Maltreatment and grave errors in treatment; medicalisation of the psycho-social; “arrogance and ignorance of health care professionals”; …

“Medical Nemesis” – Ivan Illich 1975;

“silent revolution” (Moeller 1978)

Consumer oriented health care provision (Badura 1979)

Self-help as concept of womens’ movement (Kickbusch 1981)

Anti-professionalism and countervailing power (Illich, Foucault, Kickbusch, Hackethal etc.)

Emancipation and empowerment (Trojan et al. 1981, 1986)


“Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they

know nothing”

Voltaire, 1694-1778


Action Research – Research Action


11

The beginning of self-help researchin Germany

First inspirations and sources, e.g.:

Caplan & Killilea 1976: Support Systems and Mutual Help. Multidisciplinary Explorations. New York

Katz & Bender 1976 (Hg): The Strength in Us: Self-Help Groups in the Modern World, New York

-> First essential definition of ‘self-help group‘ as voluntary, small groups to provide mutual aid for a specific purpose.


12


In the late 70‘s and 80‘s several research and model projects, usually funded by federal and state ministries, e.g.: „Psychosocial-therapeutic self-help groups“; University of

Gießen 1977-1981, (Moeller, Daum, Matzat) „Health-related self-help groups“, University of Hamburg

1979-1983, (Trojan, Deneke, Itzwerth et al.) „Self-help in the Health Care System“, University of Bielefeld

1979-1983, (Grunow, Paulus, Engfer et al.) (Analysis of individual and family self-help activities)

Research Program

“Lay-potential, patient-

activation and health

related self-help” (co-

ordinated by Christian

von Ferber, funded by

the federal ministry for

research and technology )

Research Program

“Lay-potential, patient-

activation and health

related self-help” (co-

ordinated by Christian

von Ferber, funded by

the federal ministry for

research and technology )

New Public Health!

New Public Health!Active citizenship!

Active citizenship!

Social integration!

Social integration!

Empowerment!

Empowerment!

Consumer-/citizen-orientation!Consumer-/citizen-orientation!

Third sector!Third sector!


13


Due to the co-operation between researchers and self-help activists the image and public acceptability of self-help groups has been sustainably promoted and improved.


14

Knowledge is powerBeing independentthrough self-help in groups

Knowledge is powerBeing independentthrough self-help in groups

Desire

Knowledge

Opposition

Desire

Knowledge

Opposition


15

Self-help groups:Together we are stronger

Self-help groups:Together we are stronger


16


17

The development and implementation of formal self-help support in (Western-)Germany

1979: “Initiative Group Self-Help Hamburg”

1980: Health Day in Berlin

1981: Health Day in Hamburg – title: “Self-help and self-organisation”

1981: first KISS (Kontact and Information Sentre for Self-help groups) started in Hamburg, funded by financial resources of a research project (model)


18


1982: start-up of the National Working Group on self-help groups (DAG SHG e.V.)

1984: KISS Hamburg is funded by local authorities

1984: start-up of The National Clearing House for the Encouragement and Support of Self-Help Groups (NAKOS)

In these years many other self-help clearing-houses mushroomed in different federal states


19

Development of self-help groups and number of participantsbetween 1985 and 1995

25.000

30.000

46.000

60.000

5.000 7.500

0

10000

20000

30000

40000

50000

60000

1985 1988 1992 1995

Self-help groups in Eastern Germany Self-help groups in Western Germany

Quelle: ISAB Köln-Leipzig 12/95. Modellprogramm Selbsthilfeförderung in den neuen Bundesländern

Number of participants: 1,1 Mio. 1,3 Mio. 1,9 Mio. 2,6 Mio.


20

Today: 273 self-help clearinghouses are supporting appr. 40,000 self-help groups


21


End of 80ies and in the 90ies self-help research is mainly focusing on self-help support and co-operationNowadays the focus is often laid on “New forms of self-help”, e.g.: Virtual self-help, new media, Differentiating between different sub- and target-groups in

order to promote self-help activities (socially deprived, immigrants etc.)

Professionalization of self-help, political influence, Effectivity and efficiency, Influences on self-help groups and organizations by industrial

companies, health care insurers and political decision makers,

…


Who is joining self-help groups?

Results from the

National Telephone Health-Survey 2003


23

National Telephone Health-Survey of the Robert Koch Institute 2003

Self-help group participation because of …

Sub-Group … a relative ... own health… a relative and own health

… a relative or own health

Never

Male 2,7 4,5 0,4 7,6 92,3 100

Female 4,8 4,5 0,6 9,9 90,1 100

18–29 years 2,1 1,9 0 4 95,9 100

30–39 years 4,1 3,4 0,3 7,8 92,1 100

40–65 years 5 6,8 0,9 12,7 87,3 100

über 65 years 2,8 5 0,7 8,5 91,5 100

Western Germany 3,8 4,7 0,6 9,1 90,9 100

Eastern Germany 3,6 3,9 0,2 7,7 92,3 100

Under-class 2,5 4,3 0,4 7,2 92,8 100

Middle-class 3,6 4,8 0,5 8,9 91 100

Upper-class 4,6 4,2 0,6 9,4 90,5 100

German origin 3,8 4,6 0,5 8,9 91 100

Migrational background

3,7 3,3 0,5 7,5 92,5 100

Total in % 3,8 4,5 0,5 8,8 91,2 100

Total (N) 316 376 43 735 7.583 8.318


24





Never

Male 2,7 4,5 0,4 7,6 92,3 100

Female 4,8 4,5 0,6 9,9 90,1 100

18–29 years 2,1 1,9 0 4 95,9 100

30–39 years 4,1 3,4 0,3 7,8 92,1 100

40–65 years 5 6,8 0,9 12,7 87,3 100

über 65 years 2,8 5 0,7 8,5 91,5 100

Western Germany 3,8 4,7 0,6 9,1 90,9 100

Eastern Germany 3,6 3,9 0,2 7,7 92,3 100

Under-class 2,5 4,3 0,4 7,2 92,8 100

Middle-class 3,6 4,8 0,5 8,9 91 100

Upper-class 4,6 4,2 0,6 9,4 90,5 100

German origin 3,8 4,6 0,5 8,9 91 100


3,7 3,3 0,5 7,5 92,5 100

Total in % 3,8 4,5 0,5 8,88,8 91,2 100

Total (N) 316 376 43 735 7.583 8.3188.318


25





Never

Male 2,7 4,5 0,4 7,67,6 92,3 100

Female 4,8 4,5 0,6 9,99,9 90,1 100

18–29 years 2,1 1,9 0 4 95,9 100

30–39 years 4,1 3,4 0,3 7,8 92,1 100

40–65 years 5 6,8 0,9 12,7 87,3 100

über 65 years 2,8 5 0,7 8,5 91,5 100

Western Germany 3,8 4,7 0,6 9,1 90,9 100

Eastern Germany 3,6 3,9 0,2 7,7 92,3 100

Under-class 2,5 4,3 0,4 7,2 92,8 100

Middle-class 3,6 4,8 0,5 8,9 91 100

Upper-class 4,6 4,2 0,6 9,4 90,5 100

German origin 3,8 4,6 0,5 8,9 91 100


3,7 3,3 0,5 7,5 92,5 100

Total in % 3,8 4,5 0,5 8,8 91,2 100

Total (N) 316 376 43 735 7.583 8.318


26





Never

Male 2,7 4,5 0,4 7,6 92,3 100

Female 4,8 4,5 0,6 9,9 90,1 100

18–29 years 2,1 1,9 0 4 95,9 100

30–39 years 4,1 3,4 0,3 7,8 92,1 100

40–65 years 5 6,8 0,9 12,7 87,3 100

über 65 years 2,8 5 0,7 8,5 91,5 100

Western Germany 3,8 4,7 0,6 9,1 90,9 100

Eastern Germany 3,6 3,9 0,2 7,7 92,3 100

Under-class 2,5 4,3 0,4 7,2 92,8 100

Middle-class 3,6 4,8 0,5 8,9 91 100

Upper-class 4,6 4,2 0,6 9,4 90,5 100

German origin 3,8 4,6 0,5 8,98,9 91 100


3,7 3,3 0,5 7,57,5 92,5 100

Total in % 3,8 4,5 0,5 8,8 91,2 100

Total (N) 316 376 43 735 7.583 8.318


27

I warmly welcome you to our self-help groupfor victims of self-help groups


28

Results of the Hamburg Survey hours per member per month: 10 hrs. (n=271)

Total (Number of members * hrs/month): 50.864 hrs. (n=266)

Contribution to the creation of value (Wilkens 2002) = total hours * 0,755 productivity factor * 8 EUR Participating members in 266 groups: 307,218 €/month

Participating members in 1.500 groups (Hamburg): 1,732,243 €/month

Participating members in 70.000 groups (DE): 81 Mio €/month

Other estimations are ranging up to 2 billion € / year (nationwide) (Health report Germany 2006, p. 211)

Creation of value, calculated on the basis of a survey in Hamburg

Engagement of participating / active Members of self-help groups per month

Assumption: In all groups 10 hrs activities per member and month


29Geene, Huber, Hundertmark-Mayser, Möller-Bock, Thiel, 2009, p. 18

Expenses for self-help promotion through federal ministries and states, the statutory health insurers and theGerman pension insurance in millions of Euros 1997 – 2007

Ministries of the federal states

For self-help in total

- Self-help groups

- self-help organisations

- self-help clearinghouses


- Self-help clearinghouses

- self-help organisations, national level

Statutory Health Insurance


German pension insurance

Further increasedue to § 20c

Social Security Code V

Further increasedue to § 20c

Social Security Code V


Political awareness and recognition of self-help groups (SHG) and self-help organisations (SHO):

The new roles of „patients“ and „lay people“


31

Strengthening old roles:

Patient = reporter of health outcomes, quality of life, patient satisfaction (treatment, health care services, health care system etc.)

Co-producer of social services for themselves, their family members and others (social capital) Health prevention Partner in therapy-planning (SDM) Adherence in treatment, care and rehabilitation Caring for dependent family members Voluntary social engagement …


32

New roles of patients and lay people

Collaborator in health care and health promotion

Reviewer and controller (QM, quality circles etc.)

Participant, (co-)decision-maker cp. Conference of federal states’ health ministers 1999 in Trier cp. Council for the concerted action in the Health Care System

2000/2001, chapt. 2


33

9,4 22,1 68,5

15,3 31,9 52,8

13,3 30 56,7

0% 20% 40% 60% 80% 100%

SHGs (N=149)

SH clearinghouses (N=72)

SHOs (N=90)

good or excellent moderate poor

Results from the SeKBD-Study Kurtz, Fricke, Schmidt, Seidel, Dierks, 2004

Assessment of potential political influence


34

Basis: Social Security Code V (SGB V)

Since January 1st, 2004:§ 140f: participation of patient representatives in the federal joint committee (right to comment on plans and decisions and to give advice, no right to decide)§ 140h: national ombudsperson for patients to increase the patients’ perspectives and interests in political decisions


Patients:

German Council for the Disabled: appr. 40 member-organisations, including the

Federal Association SELF-HELP with more than 100 member-organisations

Experts:

National Working Group on SHGs

National Working Group on Consumer Advising Centres

National Working Group on Patient Counselling Centres

Associations and Alliances, entitled to delegate members for the Federal Joint Committee:

Entitled Patient Representatives

Patienten-Kompetenzen stärken!


36


37

Basis: Social Security Code V (SGB V)

Since January 1st, 2004:§ 140f: participation of patient representatives in the federal joint committee (right to comment on plans and decisions and to give advice, no right to decide)§ 140h: national ombudsperson for patients to increase the patients’ perspectives and interests in political decisions


38

Federal Ministry for Self-help

Great, innit?

Have we

wrenched

from the state!


Future Challenges and Needs


40

Future challenges and needs

General societal trends

Trends in medical care and health care policies


41

General societal trends

Demographic change:

Change in family systems

Transformation towards multi-cultural societies

Change in the spectrum of diseases and disabilities: dementia, chronic diseases, rare diseases, psychiatric disorders

Increasing gap between the rich and poor


42

Demographic change: ageing societies

Increasing number of older people

Increasing life expectancy (the old old)

Increasing age ratio (population 65+ / population 15-64)

More people with resources for activities and social engagement (in the case of “active retirement”!)


43

Increasing age ratio

source: eurostat (2002)

Population of the EU-15 by age-groups


44

Change in family systems

Decreasing fertility rates

Increasing number of persons without children

Increasing number of divorces

Increasing number of one-person-households

decreasing family potentials (quantitatively)

Increasing womens‘ employment rates

Increasing burden of the middle generation, especially women with children


45

Transformation towards multi-cultural societies

Increasing number of citizens with a migrational background (in Germany approx. 19%)

Increasing need of immigrants in the following decades (at least 200.000 immigrants p.a.)

increasing needs for integration measures and programs

increasing need for intercultural change


46

German citizenswith migrational

background (incl.the German re-

settlers from Eas-tern Europe)

Citizens with non-German nationality


47

Challenges for self-help support

Developing inter-cultural competency

Identification of target groups with high needs

Identification of approaches addressing immigrant groups

Identification of relevant co-operation partners and institutions

Integrating staff of different ethnic origin

Development of suitable transfer-activities for examples of good practice (congresses, work-shops, multiplier-trainings etc.)


48

First Steps


49

Change in the spectrum of diseases and disabilities

Chronic diseases (diabetes 2, CHD, asthma, back problems, …)

Rare diseases (rare diseases are not rare: in Germany approx. 4,000,000 people (5%) are having a rare disease)*,

Psychiatric disorders,

Dementia (today: ca. 1.2 Mio, 2030: ca. 1.8 Mio, 2050: ca.: 2.6 Mio)**

* ACHSE, www.achse-online.de

** Bickel, H.: Informationsblatt der Deutschen Alzheimer Gesellschaft


50

Founding years of SHOs by type of SHO (N=134)

0%

20%

40%

60%

80%

100%

-1969 1970-1979 1980-1989 1990-1999 2000-2007

rare diseases chronic diseases

addiction and psychiatric disorders disabilitiesKofahl et al. 2009


51


52

Change in the spectrum of diseases and disabilities

Increase of chronic diseases, rare diseases, psychic disorders, dementia

Increase of functional limitations, dependency and care needs

Increase of burden and deprivation of family carers

“Compression of Morbidity“


The impact on families – a brief introduction into the EU-project “EUROFAMCARE”


54

Pan-EuropeanNetwork

CoreGroup

AGE – European OlderPeople‘s Platform

Brussels

Universityof Hamburg

(Co-ordination Centre)

Italian National Research Centre on AgeingINRCA Ancona

National School for Public Health

SEXTANT Athens

Universityof Bremen

The Medical Academyof Bialystok

&University of Gdansk

Linköping University

Universityof Sheffield

Consortium

“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”

E U R O F A M C A R E

International Advisory

Board

National Advisory Groups


55

Six-Countries-Study

Face to face interviews using a Joint Family Care Assessment with 1,000 carers per country providing 4 or more hours of personal care/support per week to an elderly relative (65+) in any need of support

Pan-EuropeanNetwork

CoreGroup


56

Pan-EuropeanNetwork

CoreGroup

Sociodemographics (description of the samples)

Number of Carers 1014 990 995 921 1000 1003 5923

ELDERS, women (%) 64,5 71,2 69,5 57,7 72,8 68,5 67,5%

CARERS, women (%) 80,9 77,1 75,4 72,0 76,0 76,1 76,3%

ELDERS’ age (mean) 79,5 82,0 78,0 81,3 78,6 79,7 79,8 years

CARERS’ age (mean) 51,7 53,4 54,5 65,4 51,0 53,8 54,8 years

25 years


57

Pan-EuropeanNetwork

CoreGroup

Relationship to ELDER (% within country)

spouse/partner 17,1 10,9 22,8 48,1 18,2 18,4 22,2

child 55,4 60,9 31,6 40,5 51,1 53,4 48,9

child-in-law 13,9 9,7 15,3 4,5 13,4 9,0 11,0

other 6,5 6,7 19,5 2,8 11,9 10,1 9,7

nephew/niece 4,2 8,3 4,6 1,3 3,0 2,8 4,1

sibling 1,8 2,4 3,6 1,8 0,9 3,0 2,3

uncle/aunt 1,0 0,6 1,5 0,9 0,6 2,7 1,2

cousin 0,1 0,5 1,1 0,1 0,9 0,7 0,6


58

Pan-EuropeanNetwork

CoreGroup

Amount of and main reasons for caring

allHours per week care/support (mean)

51 50 51 38 45 39 45,6 h

physical illness/disabilities 30,6 18,6 29,4 38,8 43,6 24,8 30,9

mobility problems 24,4 29,5 20,4 9,7 10,4 27,9 20,5

age-related decline, old age

15,9 15,0 10,7 23,9 28,0 12,1 17,5

memory problems / cognitive impairment

5,6 9,0 11,1 19,0 4,9 14,9 10,6

non self-caring 5,5 9,9 11,1 0,7 3,5 10,0 6,9

sensory problems 3,2 4,3 4,9 3,9 2,6 3,8 3,8social reasons, loneliness, need for company

5,7 2,3 5,4 0,4 4,3 2,2 3,5

safety/feeling of insecurity 6,4 7,8 2,3 0,5 0,3 1,7 3,2psychological / psychiatric illness / problems

1,9 1,7 2,5 2,2 1,0 1,5 1,8

other reason 0,7 1,8 2,2 0,9 1,3 1,1 1,3


59

Pan-EuropeanNetwork

CoreGroup


51 50 51 38 45 39 45,6 h




15,9 15,0 10,7 23,9 28,0 12,1 17,5


5,6 9,0 11,1 19,0 4,9 14,9 10,6

non self-caring 5,5 9,9 11,1 0,7 3,5 10,0 6,9


5,7 2,3 5,4 0,4 4,3 2,2 3,5


1,9 1,7 2,5 2,2 1,0 1,5 1,8

other reason 0,7 1,8 2,2 0,9 1,3 1,1 1,3



60

Pan-EuropeanNetwork

CoreGroup


51 50 51 38 45 39 45,6 h




15,9 15,0 10,7 23,9 28,0 12,1 17,5


5,6 9,0 11,1 19,0 4,9 14,9 10,6

non self-caring 5,5 9,9 11,1 0,7 3,5 10,0 6,9


5,7 2,3 5,4 0,4 4,3 2,2 3,5


1,9 1,7 2,5 2,2 1,0 1,5 1,8

other reason 0,7 1,8 2,2 0,9 1,3 1,1 1,3



61

Pan-EuropeanNetwork

CoreGroup


51 50 51 38 45 39 45,6 h




15,9 15,0 10,7 23,9 28,0 12,1 17,5


5,6 9,0 11,1 19,0 4,9 14,9 10,6

non self-caring 5,5 9,9 11,1 0,7 3,5 10,0 6,9


5,7 2,3 5,4 0,4 4,3 2,2 3,5


1,9 1,7 2,5 2,2 1,0 1,5 1,8

other reason 0,7 1,8 2,2 0,9 1,3 1,1 1,3


But: 46% of the FCs are reporting memory problems of the elders!49% of them diagnosed dementia,17% different diagnosis,34% had no diagnosis.


62

Pan-EuropeanNetwork

CoreGroup


51 50 51 38 45 39 45,6 h




15,9 15,0 10,7 23,9 28,0 12,1 17,5


5,6 9,0 11,1 19,0 4,9 14,9 10,6

non self-caring 5,5 9,9 11,1 0,7 3,5 10,0 6,9


5,7 2,3 5,4 0,4 4,3 2,2 3,5


1,9 1,7 2,5 2,2 1,0 1,5 1,8

other reason 0,7 1,8 2,2 0,9 1,3 1,1 1,3



Family Care = Burden?

Pan-EuropeanNetwork

CoreGroup


64

Pan-EuropeanNetwork

CoreGroup

Perceived Burden

ADL

Memory Problems

Behavioural Problems

Social Support

Coping

Health & Well-Being

Stress-Coping Model of Care-giving* linear regression, standardised beta-coefficients

.233***

.260***

-.299***-.126***

-.264***

-.487***

-.003

*Based on Pearlin et al. 1990


Services used by Family Carers

Pan-EuropeanNetwork

CoreGroup


66

Pan-EuropeanNetwork

CoreGroup

Types of services used by carers (all countries, N=5,923)

% of carers

0 10 20 30 40 50 60 70 80 90 100

Generic: others

Generic: Specialist doctor

Generic: GP

Other specific services for carers

Assessment of caring situation

Training for carers

Respite care

Information

Socio-psychological support

Any service (=ALL)

“generic” services

specific supports


67

Pan-EuropeanNetwork

CoreGroup

Respite care used by country

0 10 20 30 40 50 60 70 80 90 100

IT

EL

PL

DE

UK

SE

ALL

% of carers


68

Pan-EuropeanNetwork

CoreGroup

Types of socio-psychological support services used in Germany (N=1,003)

0 10 20 30 40 50 60 70 80 90 100

Psychologicalsupport by phone

Home counsellingby social worker

Psycho-socialcounselling

Self-help groups

Support groupsfor family carers

% of carers

!


69

All Reports are available on the EUROFAMCARE website:

www.uke.uni-hamburg.de/eurofamcare/ Pan-

EuropeanNetwork

CoreGroup


70


More support for the elderly

Practical and emotional support for family care-givers (caring for carers)

Highlighting the respite-, relief- and support function of self-help

Bridging family systems with self-help support measures and civil engagement

Support approaches for people with dementia (co-operation with Alzheimer associations)

Social integration of dependent older people and their relatives

Mutual aid and supporting the interests of people with rare diseases

Further development of support approaches for people with psychic disorders

…


71

Approaches and first steps


72

Increasing gap between the rich and poor

Change of average per capita net-income against 1992, in percent

The richest 10%of the population

The poorest 10%of the population

Owing 61%of all private

capital!

Owing 61%of all private

capital!


73

Trends in medical care and health care policies

Privatization and commercialization

Rationalization

Individualization and co-payment

Increasing quality management and assurance incorporating patients’ perspectives through legal and contractual obligation

Systematic development of patient orientation and participation


74

De-solidarization, commercialization and rationalization

Crediting employers and higher charging the employed

Financial benefits for non-use of health care

Concentration of physicians and specialists in medical care centres

Illness becomes produce, patients become customers

Privatization of hospitals

Economical goals rather than welfare goals

Changing doctor-patient relationship


75

De-solidarization, commercialization and rationalization

Extra-payment (IGeL)

Co-payment (medicines, technical aids, therapies, teeth, …)

Cut-downs in the health care provision lists Physio-, ocupational-, speech therapy Rehabilitation Duration of in-patient rehabilitation

Compulsary counseling about cancer screening (possible malus in case of lack of proof)


76

Most important reasons for quitting the membership in an SHO (N=148 SHO-representatives)

0% 10% 20% 30% 40% 50% 60%

Internet

Competition through other HCPO

Hartz 4

Lack of time

Not wanting to know about the disease

Information saturization

Age

Internal problems

Topic not relevant any more

Dissatisfaction

Death

Curation

Financial reasons/problems

Kofahl et al. 2009


Positive Trends: Regulated Quality Assurance in co-operation with

patients and patient-representatives


78

Regulated Quality Assurance (I)

Evidence based medicine, treatment, care (as far as possible)

Shared Decision Making (SDM)

QM and Quality reports for hospitals (compulsary)

Patient participation in the development of DMPs

Patient participation in the development of clinical guide lines

Patient participation in quality circles of GPs and specialists in ambulatory health care


79

Regulated Quality Assurance (II)

Patient complaint systems in hospitals

Patient ombudspersons in hospitals and other institutions

“Patient-forum” for quality-proved patient-information

IQWiG (Pendant to the NICE, UK)

Strengthening patients rights through better information (“patients’ charter”)


80

Regulated Quality Assurance (III)

Self-help friendly hospitals

Self-help friendly practices

Self-help friendly health care institutions

Basis:

Social Security Code V §§135a – 137b: compulsary Quality Management in all health care institutions

Quality Management Directive of the federal joint committee: SHI Care („Vertragsärztliche Versorgung“), 18th October 2005


81

1. Rooms, infrastructure, possibilities to present self-help activities

2. Regular patient-information about self-help in daily clinical routines

3. Supporting PR-work

4. Denomination of a self-help mandatory

5. Regular information-exchange between hospital staff and self-help members

6. Integrating self-help groups in education and trainings of hospital staff

7. Integrating self-help groups in quality circles and ethical committees

8. Formally agreed and documented co-operation

8 Quality criteria“Self-help friendly hospital“


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Promoting the co-operation between health care professionals, self-help supporters and patients

Supporting structural coupling between the systems “health care professionals” and “patients”, “Patients” are increasing their health literacy “Experts” are increasing their understanding of patients’

needs Possible methods: Dialogue-consensus procedures,

mentorship-programs, education and training

Providing information and counseling about co-operation measures and methods

Representing and mediating patients’ interests


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Future perspectives and chances in summary

Increasing chances for self-help and „lay-potentials“ Civil engagement Quality Management in the health care system Promoting measures for patient and health-consumers

sovereignty

• Old and new ambivalences: Emancipation, participation, autonomy, sovereignty of health

care receivers on the one side; - on the other: Compensation of deficiencies (self-help as a substitute),

becoming part of the “establishment”, and legitimating a liberal market system for health care and social goods


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Thank you!

Documents

Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie "European Expert Meeting on Self-Help Support" The way from passive health consumers