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Description
At present, patient organizations in the Czech Republic do not have the right environment to fulfil their role as an independent and competent actor in the field of healthcare. To this end, patient organizations need to be supported – through education, training and financial support and feedback and stimuli from patients themselves – care users – need to be brought to the table.
Patient hub should have particularly those functions:
- Space for education and training of patient organizations, individual patients and public in form of lectures, seminars, conferences.
- A web portal with online educational content and video footage taken from events taking place at hub: accessible to everyone. The portal will include a Customer Relationship Management (CRM) system for Patient hub team, which will make it possible to target information at individual patients and patient organizations more effectively.
- Space for networking and sharing experience and best practice amongst each other and with other stakeholders in health care (non-governmental organizations, medical students, doctors, academics, app developers etc.). The purpose is to improve communication between patients and other stakeholders and their mutual connecting.
The overall aim of the project is to strengthen and professionalize patient organizations so that they can be an equal partner to other health actors, who is able to effectively comment on legislative and non-legislative proposals and provide feedback and suggestions from users of care themselves, as well as providing them with services (providing and sharing information, counselling, self-help activities etc.).
The target groups of the project are patient organizations, that is, representatives and members of patient organizations, as well as individual patients and public.
Summary of project results
The project helped to strengthen and professionalize patient organizations. A learning and co-working space was established and a web portal was created to inform about events and offer educational materials. An information campaign and Facebook posts were carried out throughout the project.
The project team experienced a number of challenges and problems during implementation, such as the covid-19 pandemic, communication problems with the Norwegian partner and frequent personnel changes.
1. Equipment of the Patient Hub premises and operation:
The rented space included offices, meeting rooms and a large coworking space for educational events and conferences. The space was fitted out with furniture and IT equipment. Reservations were made through an online booking system. The premises were used by patient organisations for seminars and meetings.
2. Development of a portal for patients and patient organisations:
The creation of a portal with e-learning tools, a CRM system and the possibility to book rooms, a Facebook profile and the use of Ecomail to send out newsletters and invitations allowed to ensure information about project events.
3. Hub programme:
Educational and information events, conferences and information campaigns. Through seminars and e-learning courses, the necessary knowledge and know-how was transferred to patient organisations. A total of 4 conferences were held and a media campaign with video and printed materials was carried out.
Main project outputs:
- Establishment of the Patient Hub - The Patient Hub had 2 parts, i.e. the physical hub space and the web portal
- Training and educational events for patient organisations - a total of 1,164 people were trained.
- Implementation of awareness raising actions: information campaigns - media campaign with video spot (over 1.3 million views), printed materials, 1 672 550 accesses to the web portal
Summary of bilateral results
The Norwegian partner organization Norsk Revmatikerforbund (NRF) was involved in the project, which participated in the implementation of the project through consultations in the framework of the development of the portal and cooperation in the preparation of workshops and education for patient organizations. The main benefit for the project was the cooperation with the partner, especially the experience of the Norwegian organization NRF. The possibility of sharing know-how in the field of the functioning of professional patient organizations and communication with members of patient organizations and other actors was essential. Examples of good practice from Norway were presented to patient organizations in the Czech Republic.