The role of patient organizations in the health care system. Conference of the PACJENCI.PRO Initiative

- The time of the soloists in healthcare is gone and now it's time to play as a team. Only team work - in relation to diagnosis or treatment of a patient - produces the best results, as evidenced by the fact that the medical profession is evolving into team work - said Prof. Mariusz Gujski, Dean of the Faculty of Health Sciences, MUW, during the conference "Health care system of today and tomorrow. Perspective and experiences of patient organizations". The event was organized by the PACJENCI.PRO Academy for the Development of Patient Organizations initiative, carried out as part of cooperation between the Faculty of Health Sciences of the Medical University of Warsaw and the Employers' Union of Innovative Pharmaceutical Companies INFARMA, under the honorary patronage of the Patients Ombudsman.

The conference participants discussed the contributions of patient organizations to the health care system, how these organizations view collaboration with policymakers and clinicians, and what collaboration looks like from the perspective of representatives of the administration. The patient organizations have long expressed a willingness to participate in earlier stages of decision-making processes. Increasingly, the medical and scientific community as well as representatives of public institutions are also recognizing the benefits of involving patient organizations in healthcare decisions and processes.

- In the latest, hugely important draft of the Health Quality and Patient Safety Act, it is the patient perspective - along with management and clinical value - that will be one of the elements against which we will examine quality in the health care system. Increasingly specialized and professional patient organizations are ready to be a partner in this process. Sometimes very expressive patient assessments have an impact on the direction in which the health care system is changing - pointed out Minister Bartłomiej Chmielowiec, Patients Ombudsman.

More and more countries are realizing that the value of involving patients and patient organizations in monitoring the quality of health services, developing the necessary systemic solutions in line with international practice and co-creating national health policy by involving patient organizations in shaping health system solutions. Such a direction has been taken, among others, by Great Britain, Canada, Switzerland, Australia and the Czech Republic. During the meeting, the model of involving patient organizations was discussed by Victoria Thomas, a representative of NICE (National Institute for Health and Care in the United Kingdom). In recent years, the role of patient organizations has been significantly strengthened in the Czech Republic. The Patients Council was established under the Ministry of Health to take positions on all issues affecting patients, including access to medical technologies and medicines. This perspective was presented by René Břečťan, Vice President of the Czech Association for Rare Diseases (ČAVO).

Other speakers at the conference included: Dominik Olejniczak, MD, PhD, from the Department of Public Health MUW, PACJENCI.PRO project coordinator on behalf of our university, Agnieszka Wołczenko, President of the National Association of Patients with Heart and Vascular Conditions EcoSerce, Krystyna Wechmann, President of the Polish Coalition of Oncological Patients and President of the Federation of "Amazons" Associations, Senator Beata Małecka-Libera, Magdalena Kołodziej, President of “My Pacjenci” Foundation, as well as Iwona Czabak, President of the Marfan-Poland Association.

Honorary patronage over the event was taken by the British Embassy in Poland.

The video recording of the conference "The health care system of today and tomorrow. Perspective and experiences of patient organizations" is available at the link.

Prepared. based on press materials of PACJENCI.PRO