Patient organisations are quite unique as they take strength and courage to build. There are almost 5000 of them registered in Poland (around 40,000 in Europe). Patient organisations should work as a collective, bringing together the various views and priorities of its members. It takes time to integrate all organisations and maintain the coordination, but when it works, the result is a powerful voice.
The Federation of Polish Patients (FPP) is an umbrella organisation that recognises integration of patient associations as one of its most important priorities. In many cases, taking care of the interests of their own members, patient organisations compete with each other. Building awareness of the partnership among them can be a very difficult task. The situation in Poland in this sense is very similar to those in other Central European countries.
Nevertheless there are plenty of active organisations to choose from to form solid alliances. FPP concentrates on its members' opinions and delivers them to decision makers. At the beginning of FPP's existence the most important topic was access to healthcare and this still remains very important but other subjects have grown in importance: Quality of medical services, innovative treatment, early prevention of chronic diseases and e-health issues.
This large spectrum of issues on national level can only be tackled by building a larger partnership with medical professionals, industry and regulators. Another partner on that trail is European Patients' Forum (EPF), an umbrella organisation of European and national patients' organisation. It provides a platform for knowledge exchange, education and consultations for its members. Support received throughout those channels enables FPP to take part in many projects and to organise large-scale events.
In this context, the aim of the EPF and FPP Warsaw conference on the rights and needs of older patients held in July 12-13, 2011 (the biggest patient-led event during Polish Presidency) was to exchange experience and insights with stakeholders at EU and national level on how to ensure high quality, patient centred equitable care for older patients, and ensure that the current challenges facing health and welfare systems are met whilst maintaining the respect, dignity and quality of life of older patients with chronic diseases and addressing their needs. It also aimed at exploring current initiatives and policy at EU level to debate how they can help address the needs of older patients.
A key principle of the European Innovation Partnership is that innovation should be centred on the user's needs. Participants identified barriers to the take-up of innovations from the perspective of patients and carers, such as communication issues. They also identified success factors such as equal partnership, and financial investment in the outcomes, as well as including a societal approach in health technology assessment
Another big topic (not only for Poland) is health literacy and information for older patients, including e-health literacy. Participants concluded that EPF/FPP's recommendations on health literacy are still valid but need to be reviewed in light of older patients. Participants stressed that good practices exist but that there is an evidence barrier, which prevents their transfer and implementation at national/local level. They also highlighted health literacy as a crucial topic which should be addressed as a priority by the partnership.
There was a consensus among participants that implementing these rights will be beneficial for patients, improving their health outcomes and quality of life and that it is a sound strategy for the sustainability of healthcare system.
Patients and E-Health
The "Chain of Trust" project is another patient- led activity. Prepared and coordinated by EPF, it is conducted in six European countries. The overall objective of this project is to advance the empowerment of patients, health professionals and national health authorities across the EU in their understanding and effective use of telehealth services in an effort to actively contribute to the vision of high quality, patient-centred, equitable healthcare. FPP (as EPF member) is organising a series of focused and well-defined actions so the project will also strengthen significantly the levels of awareness and trust for all key stakeholders. Two specific objectives have been set out for this project:
- Knowledge gathering.
- Raising awareness and understanding.
The FPP is also a member of the Steering Committee of the Centre for Healthcare Information Systems in Poland, adding a patient voice. This way a unique and unprecedented assessment of the views, needs, benefits and barriers related to telehealth from the perspective of patients and health professionals will be produced.
With the wider deployment of electronic medical records there is an unprecedented opportunity to provide truly collaborative, more equitable patient-centred care to all patients in Poland and across the EU. Giving patients access to electronic health records can lead to huge benefits in terms of improved disease management and quality and safety in healthcare, particularly by reducing errors and improving coordination of care, better more efficient communication between healthcare providers and patients and, last but not least, enabling the patients to become active players in the healthcare delivery system.
Next year, the European Year of Active Ageing and Solidarity between the generations, will offer a valuable and concrete opportunity for change as the political focus will be on ageing.