Background

Studies on citizen and patient participation underscore the importance of participation as a means to enhance the Austrian healthcare system. The already high level of organization among interest and self-help groups, sets the stage for more patient and citizen participation. However, to fully unlock its potential systematically, certain steps still need to be taken. Above all, it is crucial to find effective methods to reconcile diverse interests and maintain a comprehensive perspective on a variety of issues. Ultimately, efforts should aim to convince decision-makers of the importance of participatory processes.

Project content and goals

In the feasibility study "Citizen and Patient Participation in the Austrian Healthcare System" we work out recommendations on how to give patient interests more weight within the healthcare system and provide a “toolkit” to accomplish this in a systematic way. We aim to identify effective leverage points and develop strategies to foster citizen and patient participation on a nationwide scale in the Austrian healthcare system.

Central questions that arise in this context are:

Which individuals (people with various health issues, family members, etc.) and groups (advocacy organizations, support groups, umbrella associations, etc.) need to be involved? Which sub-goals need to be reached, and at what level are they to be implemented? What instruments are to be utilized? What type of support is needed? To what extent can existing structures and initiatives be leveraged (development of health goals for nursing care reform, advancement of specific strategies)? How can processes and workflows be streamlined and systematized?

Method

Previous work on citizen and patient participation forms the knowledge base of the current project. Recent developments in Austria over the past years are analysed, and the gained insights are translated into a set of criteria for participatory processes. Key aspects, including representation, commitment, transparency, as well as considerations related to structure, organization, and financing, are identified. The criteria are discussed and concretized in a collaborative research process involving participation experts and patient representatives. A main outcome of this process are principles and recommendations for advancing nationwide citizen and patient participation within Austrian healthcare systems.

Result

Several principles and recommendations can be derived from the results of the study:

• Ensuring inclusive and intersectional access to participatory processes. The threshold for engagement must be low, and the different life situations and perspectives of citizens and patients (e.g., people with disabilities, those affected by poverty, children, etc.) must be taken into account.
• Fostering the development of capacities (capacity building) at all levels and for all individuals involved (financially, content-wise, and organizationally).
• Establishing sustainable processes and structures that can be flexibly adapted to changing conditions and new circumstances.
• Building a central organization or a network of self-help associations and advocacy groups as a stable, open, and inclusive framework for exchange, networking, and the planning/coordination of joint actions.
• Collaborative development of a virtual overview portal listing all self-help groups and associations, providing information on ongoing, planned, and completed participatory processes and projects.
• Establishment of a permanent body tasked with a comprehensive participatory agenda, ensuring the ongoing development, planning, and evaluation of participatory processes in healthcare. This body should comprise members from administration and politics, as well as representatives from interest and self-help groups. Additionally, the body should be supported by a department that is closely linked to the relevant ministry and that is responsible for cross-sector coordination of participatory processes.

Putting the formulated recommendations into practise will be the focus of a subsequent project.

Detailed information on the study can be found here (in German): Feasibility Study

An overview of the contents as a presentation can be found here (in German): Presentation