Council of Patient Organizations at the Patient Ombudsman - summary of the year

The Council was established by the Patient Ombudsman in 2020. Currently, 142 patient advocacy organizations are affiliated with it. This year, after several years of its activity, it was agreed that for good cooperation, exchange of experience and faster establishment of dialogue with other institutions, the Presidium of the Council, consisting of representatives of 5 organizations, would be elected. As a result of a secret ballot, the Presidium included:

• Stanislaw Maćkowiak, Federation of Polish Patients Federation Chairman;
• Magdalena Kolodziej, We the Patients Foundation;
• Joanna Frątczak Kazana, ALIVIA Foundation;
• Iwona Czabak, Marfan Association Poland;
• Robert Lesniak, Too Soon Association.

In 2024, 5 meetings of the Council of Patient Organizations were held.

The first meeting in 2024 presented topics submitted by organizations for the Patient Ombudsman to address. The Coalition for Hospital Safety presented the results of the "Safe Hospital is Safe Patient" report. During the meeting, the need to amend the Law on Patients' Rights and the Ombudsman for Patients' Rights and the need to expand the Ombudsman's powers, as well as to regulate cooperation with organizations, resounded. Therefore, at the second meeting this year, proposed amendments prepared by the Ombudsman's Office were presented, and the organizations supported the proposed changes.

Following numerous media reports on the situation of the public payer, the third meeting of the Council presented the results of the Report, prepared by the Institute of Public Finance and the National Institute of Public Health - PZH, on the financial situation of the public payer and its prospects in the coming years. The fourth meeting dealt with the Telemedicine Code prepared by the Coalition To Help the Indigent. During the last, fifth, meeting this year, a representative of the ALIVIA Foundation discussed the implementation of the National Oncology Strategy in 2020-2030 through the eyes of a patient organization prepared by the Oncofoundation.

In 2024, two more meetings of limited organizations were held on the joint project "Connecting Us Patients." This is a joint effort between the Patient Ombudsman and foundations and associations working on behalf of patients. The first edition of the project took place in 2018-2020. As part of the Ombudsman's toll-free nationwide hotline, specialists from each organization provided advice, information and support on specific diseases. On-call services were held periodically, according to a predetermined schedule. Information on the topics and the schedule with the on-call schedules of individual experts appeared regularly on the Patient Ombudsman's website and social media.

Two new Teams have been established in 2024. One of them is responsible for cooperation with women's advocacy organizations. These organizations presented women's problems, including those related to compliance with standards of perinatal care.

The second Brain Disease Team, during the meetings, jointly developed the POSTULATES OF THE BRAIN DISEASE TEAM. OF BRAIN DISEASE AT THE PATIENT'S RIGHTS COUNCIL, which defined the strategic directions of the Team.

In 2024, training was conducted for patient organizations on Compensation Funds operating under the Patient Ombudsman.

As part of the cooperation, representatives of PEFRON held a training session entitled. "The right to accessibility." This topic touches on many important spheres of life for all of us, but its main addressees are the elderly and people with disabilities.

Patient Ombudsman Bartlomiej Chmielowiec met individually with organizations belonging to the Council throughout 2024. During the meetings, the problems of a particular group of patients, the activities of the organizations were discussed, and reports prepared by the organizations were discussed. The Ombudsman pointed out the need to educate patients about their rights, prevention and the use of immunizations. He requested that all information on the practices of various entities regarding treatment contrary to current medical knowledge be passed on.

Among other things, training on the Reimbursement Law and on the implementation of standards for the protection of minors is scheduled for 2025.

Source: MPC