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Patient participation and empowerment in integrated Care: Concepts, experiences and
challenges in an Viennese model project
Peter Nowak, Christa Peinhaupt, Susanne Herbek
The Austrian health care system is characterized by a fragmented organisational and
financial provider structures and few standards for information transfer and co-operation
between different providers. Therefore in Austria integrated care is high on the agenda in
health policy and health planning. But patient empowerment and patient participation (as
central recommendations of health promotion) are marginally developed in the Austria:
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

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One patient advocate in each province
Self help groups (local initiatives, only partially organised in umbrella organisations)
Patient surveys (local initiatives in hospitals, no systematic surveys in primary health
care)
Here and there:
 Patient ombudsmen in organisations
 Complaint management systems in hospitals
Three theoretical assumptions are our basis for further development of patient oriented
integrated care:
1. Patients are considered as co-producers in the health care system
2. To analyse patients involvement as co-producers in the health care system it is helpful to
differentiate the individual interaction (micro) level, the organisational level (meso) and
the level of health policy (macro)
3. On all three levels the quality of structures and processes of empowerment and
participation are decisive for developing patient oriented integrated care.
Our thesis is, that the development of patient oriented and integrated care needs the
representation of patients interests by empowered patients themselves (and not by health
care professionals). But patients are usually not able to act in this way, because of missing
participation opportunities and not sufficient empowering communication culture in the health
care system. New participating and empowering structures and processes on all three levels
(micro, meso and macro) are needed.
This thesis is a result from our experience in a recent model project “Patient Oriented
Integrated Care (in Vienna)” (www.pik-wien.at) 1, in which we included patient involvement on
the meso- and macro-level of the project structure (see fig. 1). A “Patients/Family Carersgroup” was established and is working together with health care professionals from hospitals
Commissioned by “Wiener Gebietskrankenkasse” (Vienna District Health Insurance Fund), and City of Vienna:
“Health Planning and Financial Management” and “Vienna Hospital Association”
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and primary care sector in specific problem areas of integrated care (e.g. admission- and
discharge management, home care).
Figure1:
The experiences with patient-involvement in this project showed certain strengths,
challenges and needs for support of patients in participating in a development project like
this:
Strengths of patients participation:
Patients …
 have a clear perspective for the “real” living situation of patients
 have practical Know how in finding support for living with illness & handicap
 have broad experience in the encounter with the professional health carers
 are good in defining problem areas
 develop easily visions, aims for improved patient orientation (without considering practical
constraints)
Challenges and problems of patients participation:
Patients …
 have rather individualised or diagnose specific perspectives
 are reluctant to intervene in questions of medical treatment
 have few insights in causes on the organisational level
 are restricted in their (continual) participation by sickness and death
 have rather restricted skills for the development of the health care system
Needs for support of patients in a participation process:
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Information
 Translation of expert language to lay language
 Knowledge of the health care system (legal, organisational)
Project management & social process
 Outcome orientation instead of complaints
 Integration of different perspectives
 Handling of & support in communication with health care professionals
Lobbying and access to important stakeholders
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Our conclusions are first recommendations of necessary structures and processes for patient
empowerment and participation in health care in Vienna (and maybe elsewhere):
Recommendations on the health system level (macro level):
1. Legal & financial regulations for empowering communication (invoice item for
hospitals, doctor´s fee)
2. Structures and financial support for patient participation on the political level for
assessing laws & health care planning (e.g. as in NL)
3. Structures and financial support for self help groups
4. Establishing patient information systems (e.g. as in NHS-direct)
5. Systematic patient surveys in hospital and primary care
6. Systematic publication of process and outcome quality (e.g. as in Star rating GB)
Recommendations on the organizational level (meso level):
1.
2.
3.
4.
5.
6.
Systematic structures for complaint management
Direct participation in quality development systems
Systematic structures for lay help (self help groups etc.)
Systematic training and supervision for lay helpers
Standards for patient oriented communication
Agenda setting by senior staff and management: priority of patient oriented &
empowering communication
7. Systematic education and training for health professionals in patient oriented &
empowering communication
8. Adequate infrastructure and resources for communication
Further Informations:
Peter Nowak, Ludwig Boltzmann Institute for the Sociology of Health and Medicine, Vienna.
E-mail: peter.nowak@univie.ac.at