On 7 February this year, representatives of organisations working for the benefit of patients met in Warsaw for the 14th time. The occasion was a two-day conference organised annually by the Institute for Patients' Rights and Health Education, attended by 180 leaders of patient organisations, as well as representatives of administration, officials, experts and the media.
"Organised since 2006, the Patients' Organisations Forum is a platform for the integration of the community of organisations and associations working for the benefit of patients, which enables the leaders of individual organisations to draw attention to the biggest problems they face in their daily activities and in the fight against illness." - Rev. Dr Arkadiusz Nowak, President of the Institute for Patients' Rights and Health Education
This year's meeting began with an inaugural meeting entitled. "Participation of patient organisations in the health care system" with the participation of Minister of Health, Patient Ombudsman, President of the National Health Fund, the aim of which was to discuss the role of patients in building up the healthcare system, as well as to present the latest initiatives emerging from the Patients' Rights Ombudsman and the National Health Fund aimed at strengthening the competences of the organisations' leaders. The official opening of the conference and speeches by special guests were followed by a discussion with representatives of patient organisations in the form of public hearing.During the debate, patient organisations raised issues regarding systemic solutions concerning, among other things, easing the burden on the carer of an oncology patient, streamlining and speeding up the implementation of reimbursed therapies at regional level, as well as the billing of the RDTL procedure and the need for organisational changes in hospitals, mainly district hospitals, to provide services and care for seniors. The organisation's leaders drew attention to medical device reimbursement regulations and systems that are unfavourable to patients, related to the way in which absorbent agents are billed, as well as regarding home parenteral nutrition. Patients expressed hope for improved diagnostic processes and further decisions in the area of small cell lung cancer, improved access to rehabilitation in diseases such as multiple sclerosis, among others, and also called for help in the fight for healthy air and increased access to anti-smoking clinics. During the public hearing, questions were also asked about the National Plan for Rare Diseases, the criteria and timing for the establishment of Reference Centres, as well as the possibility of accessing preventive treatment for selected rare diseases such as hereditary angioedema.Patient representatives also raised the topic of the use of the sugar tax and the possibility of allocating these funds to the fight against civilisation diseases such as obesity and diabetes. The ceremonial part of the meeting ended with the presentation of commemorative awards "For Health and the Patient" established by Ombudsman for Patients' Rights, President of the National Health Fund, Institute for Patients' Rights and Health Education for organisations that were awarded prizes in 3 categories: preventive health activities, patient safety and rights and volunteering. The award winners in the prevention category were the organisations: Federation of Amazons Associations, Stoma Life Foundation, Polish Organisation Against Cervical Cancer - Flower of Womanhood; in the category of patient rights and safety: SSarcoma and melanoma support association, National Association of Young People with Inflammatory Connective Tissue Diseases "Let's stick together", Open Minded Families Associationand in the category of voluntary and community activities Onkocafe Foundation - Together Better, Appetite for Life Association, Approval Foundation.
The remainder of the event was filled with a series of keynote lectures and workshops led by distinguished mentors and specialists in public health, psychology or communication. The programme, within the three thematic sections: oncology, health and knowledge, included lectures entitled. "CAR-T technology - new hope for haematooncology patients" (Prof. Iwona Hus), as well as "The oncology patient in the era of technology and science development" (Dr Aleksander Sowa), "Evidence or values. New models of healthcare services" (Magdalena Władysiuk), "The impact of the co-responsibility for the treatment process of participants in the healthcare system on the health outcome of Poles" (Dr Beata Jagielska, Dr Agnieszka Sznyk) "How not to be eaten by illness, that is, the role of nutritional treatment during therapy' (Dr Paweł Kabata), 'How to help others without losing yourself' (Adrianna Sobol), 'Fake news in science and medicine - how to defend against it and check the sources' (Crazy Nauka - Aleksandra and Piotr Stanisławski).
