moskow, 26- 28 may 2004 Peter Nowak, Christa Peinhaupt, Susanne Herbek

1. model-project “patient-oriented integrated care (in vienna 14th to 17th district)” patient participation and empowerment in integrated care concepts, experiences and challenges in a Viennese model project moskow, 26- 28 may 2004 Peter Nowak, Christa Peinhaupt, Susanne Herbek

2. Model-project “Patient-oriented integrated care (in Vienna 14th to 17th district)” (PIC) • Comissioned by: • Wiener Gebietskrankenkasse” (Vienna District Health Insurance Fund) and • City of Vienna: “Health Planning and Financial Management” and “Vienna Hospital Association” • July 2002 – December 2004 • HOMEPAGE welcome to PIC ! Comissioned by • Vienna District Health Insurance Fund “Wiener Gebietskrankenkasse” • City of Vienna • “Health Planning and Financial Management” • “Vienna Hospital Association” • July 2002 – December 2004 www.pik-wien.at

3. Structure and providers in the project-area (4 city districts) XVII 276.800 Inhabitants 6 Hospitals (4300 hospital beds) 590 GPs and medical specialists 2 Health and Social Centres (public) 20 Home Health Care Services (private) 47 Pharmacies 80 Therapists XIV XVI Viennese-wide transfer is planned XV

4. Overview • Background • Integration and patient participation in the Austrian health care system • Theoretical framework – central thesis • Patient empowerment & participation in Vienna • Selected results on the status quo and improvement measures • Patient participation within the project: structures & experiences • First recommendations for structures and processes for patient empowerment and participation

5. Key problems for patients in integrated care in Austria • Very fragmented and poorly integrated system • Access options for patients are very open, but • Competences of providers are not transparent • Poorly developed communication processes between providers • Poorly developed communications processes with patients at the transition points between health care providers • Marginally developed patient empowerment and patient-participation

6. (Limited) structures for including the patients perspective in health care in Austria • 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

7. Theoretical assumptions of our model project • Patients are considered as co-producers in the health care system • Patients involvement in the health care system can be differentiate on three levels: • Individual interaction level (micro) • Organisational level (meso) • Health policy level (macro) • On all three levels the quality of structures and processes of empowerment and participation are decisive for developing patient oriented integrated care.

8. 56 % Selected data on deficits in status quo: Empowering communication in discharge Did the (hospital) doctors encourage you to ask questions related to your discharge from hospital?

9. 67 % (n=63) Selected data on deficits in status quo: Patient trainingin discharge Were you or your relatives trained in practical skills that help you to manage your illness in everyday live?

10. What are the consequences? • Patients have to bridge a lot of organisational and informational gaps between providers, • but Patients are not (enough) empowered to do that • Patients might get lost in an open but intransparent system • Deficits in responsiveness to individual patients needs and health care outcomes • Patients want more integration within the health care system, • but can not raise there voice in health care planning and development

11. Specific tasks of integrated care in PIC: Selected measures • Integrated referral and discharge management (IRD) • Standardised referral form • Integrated patient letter (discharge) • Integrated care for patients at home (ICH) • “Health folder” patient centred integrated care documentation • Case management (in discharge-process and care at home) • Diagnosis related integrated care (DIC) • Mobile consultant service • Transmural coordinated patient education • Patient involvement (PAT) • Self-help groups accessible in hospital • Internet-based information on regional care provision

12. Patient participation in the project • Patient & family carers group • Patient representatives in all project groups • Patient Advocate as adviser in the steering committee • Patient representatives and Patient Advocate in the Committee for Transfer • Patient surveys for evaluation • in discharge • at home

13. Patient & family carers group in PIC • Consists of 12 members • Representatives of self help groups • People who were/are often patients • Family carers • Main tasks • Bringing the perspective of patients into the three other project groups • Implementing special measures of patient empowerment and participation • Formulating recommendations for measures increasing patient orientation in integrated care • External support • Facilitator & project manager • Social scientist

14. Experiences from the work with the patient group – Strengths 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)

15. Experiences from the work with the patient group – Challenges & Problems 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

16. Experiences from the work with the patient group – Need for Support • 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

17. Regional implemen- tation within the management of health care organisations • agenda setting, implementation of standards / training • by management • empowered and well informed patients“co-producer” • empowering & patient oriented • communication • processes Model for implementing structures & processes: patient empowerment structure process outcome • Legal & financial framework for • empowering communication macro • adequate infrastructure and resources for communication meso • staff with adequate communication skills, attitudes & resources micro following Jürgen Pelikan 2004

18. Recommendations for patient participation Macro-level(health system) • Legal & financial regulations for empowering communication (invoice item for hospitals, doctor´s fee) • Structures and financial support for patient participation on the political level for assessing laws & health care planning (e.g. as in NL) • Structures and financial support for self help groups • Establishing patient information systems (e.g. as in NHS-direct) • Systematic patient surveys in hospital and primary care • Systematic publication of process and outcome quality (e.g. as in Star rating GB)

19. Recommendations for patient participation Meso-level (organisations) • 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 • Systematic education and training for health professionals in patient oriented & empowering communication • Adequate infrastructure and resources for communication

20. Further information on our websites Model project patient-oriented integrated care in Vienna, 14th to 17th district www.pik-wien.at Ludwig Boltzmann Institute for the Sociology of Health and Medicine: www.univie.ac.at/lbimgs City of Vienna, Health Planning and Financial Management www.wien.at/who/