Health Network – Patient Rights in Practice

April 18 is European Patient Rights Day. The Active Citizenship Network, a long-standing partner of the Institute for Patient Rights and Health Education, was established by a non-governmental organization. European Patient Rights Day is celebrated in all EU countries. It promotes the provisions of the European Charter of Patients’ Rights. In this regard, and in order to present the progress of the “Health Network” project to date, a conference on patient rights was held in our editorial office.

See report:

“Health Web” – what is this project?

The main goal of the project is to provide patient organizations with access to legal advice on patient rights and the health care system, as well as to professionalize the leaders of this society so that they can more effectively advocate for patients and their families. The training activities included a number of inpatient and online workshops on topics previously reported by leaders, including psychology, GDPR, communication and PR, health care, stakeholder collaboration, and patient rights. The use of modern tools has allowed the participation of a wide range of patient organizations. The project meets the critical needs expressed by patient organizations in terms of training, counseling and support for this community. Its implementation will contribute to the development of the powers of the heads of patient organizations, strengthen their position among stakeholders and allow more effective implementation of the mission for the benefit of patients.

Igor Grzesiak, Vice President of the Institute for Patient Rights and Health EducationAs part of the project, the Institute provides training to organizations, including access to legal advice and system knowledge in the field of health care, including training for NGO leaders on other issues, effective in terms of legal regulation of patient rights, stakeholders of the organization. cooperation, Communication and PR, as well as psychological aspects of work in organizations. The plans include, among others, a meeting on the functioning of the health care system in Poland.

– In addition, the project includes the Patient Rights Clinic. (…) Currently, 122 questions have been received and 47 organizations have benefited from its support. We are also strengthening our website for patients and patient organizations, which will create a total of 20 articles and expert analysis, – said Igor Grzesiak.

The materials already found on the organization’s website include expert research on existing problems for the health system, such as the Medical Fund, the organization of tele-consultations, restrictions on specialist care, or the Compensation Fund. Materials on the health of refugees are also being prepared.

What do patients ask about?

Participating in the project, dr hab. Dorota Karkowska – lawyer, expert of the legal clinic of the Institute of Patient Rights and Health Education, emphasizes that questions about patient rights go through various channels. Reports via email or social media are predominant, and rarely phone calls.

– This situation happened when one of the people wanted a loved one who died of cancer during the pandemic, and hospitals were closed. Then the question arose – what to do to be able to accompany the dying – the lawyer shows.

– The incoming questions could be divided into two groups. The minority NGO leaders had questions about the activities that their organizations could do for the patient. The rest of the group consists primarily of questions from members of the organization about the availability of benefits (…) – says Dorota Karkowska.

What are the results of the questions sent to the experts? According to the lawyer, the lack of knowledge in the field of social security, which is widely understood among the project participants, prevailed. Patients and organizations were not fully aware of the benefits they had in terms of patient care, pensions, or solutions to support people with disabilities.

Therefore, Dorota Karkowska encouraged organizations working for the benefit of patients to contact the Institute, ask questions and express their doubts. – Sometimes questions asked by organizations or patients require more time and in-depth examination. Sometimes checking these rules takes longer to answer certain questions and give the patient a tool that they can use more, the expert said.

Details of the activities carried out within the project

Ombudsman for the protection of rights

The patient community emphasizes the changes in the activities of government agencies that protect their rights in recent years. Urszula Jaworska – As the President of the Urszula Jaworska Foundation stressed, the work of the current Patient Ombudsman should be commended, at his initiative, the Patient Hotline was launched.

Jakub Gołąb, Director of the Department of Social Dialogue and Communication at the Patient Ombudsman’s Office He stressed that currently the activities of the agencies are focused on three main groups.

– On the one hand, these are actions reported by patients in individual cases, where, for example, on-site examination, documentary examination should be carried out. And we deal with many such issues. We also have collective violations of patients’ rights, and these are, for example, issues that could pose a potential threat to the lives or health of more patients, he said. A third area, for example, is education in the field of health system issues, implemented by the Department of Strategy and Systematic Action, which consists of clarifying suspicions in the Ministry of Health or the National Health Fund. “Recently, we applied for approval of an order for medical devices for Ukrainian citizens, which was also a problem,” said an MPC spokesman. The scale of operations is also evidenced by the number of notifications received by the organization. According to Jakub Gołąb, last year alone the Ombudsman’s Office received about 130,000 appeals. widely understood patient rights reports.

Not only rights but also obligations

Urszula Jaworska from the foundation named after him, the Patient Rights Ombudsman’s Office, which has been operating in the patient community for many years, has been working on a very large scale in recent years. “We know that during various crises, such as a pandemic or now a war, there is a lot of information about certain violations in the health care system,” he said.

However, he admits that patients should not forget their obligations in addition to their rights. He called not to be indifferent to situations where the rights of patients are violated.

– I recently met him at the clinic, and the patient admitted that he would not report any violations, because he comes to the clinic once every six months. This is wrong, because the lady’s moral duty is to inform the situation so that others who have suffered as a result of non-compliance with the patient’s rights do not experience them again, – says Urszula Jaworska. And he adds – it is our civic duty to support others who do not have the courage or strength to address certain issues in the field of patient rights.

Patient rights such as personal rights

Experts also emphasize that respect for patients’ rights is not directed against the health care system.

– I see them as standards of good behavior. Even if there was no law on the rights of patients, we would have these rights, because they are, for example, derived from Article 23 of the Civil Code, that is, so-called personal interests. Like everyone in any public space, I have the right to dignity, intimacy, confidentiality, autonomy, and freedom of conscience. Patient rights are a kind of good practice that repeats itself in the laws on individual medical professions, as well as in the health care system – Dr. Dorota Karkowska.

A new initiative for patients

The latest initiative of the Patient Rights Institute is an institution “Poland breathes healthily” of the Alliance for Combating Infectious Diseases of the Respiratory System. Its purpose is to prevent health problems associated with an increase in the number of infectious diseases of the respiratory system. The goal of the PZO Alliance is to identify long-term systemic solutions aimed at effective disease prevention and reducing the percentage of people hospitalized due to infectious diseases of the respiratory system. Other high-risk groups for these diseases include people suffering from chronic diseases such as diabetes, asthma, COPD, cancer, heart disease. The activities of the PZO Alliance also aim to raise public awareness of infectious diseases of the respiratory system through information and awareness-raising activities.

In addition to the Institute for Patient Rights and Health Education, the initiators of the PZO Alliance are non-governmental organizations representing patients with chronic diseases: the Polish Diabetes Association, the Amazon Federation, the National Association of Cardiovascular Diseases EcoSerce, the Polish Asthma and Allergic Diseases Association.

Read more about the project

Institute for Patient Rights and Health Education Its activities are primarily aimed at supporting systemic solutions aimed at improving the condition of patients, raising public awareness in the field of health-oriented attitudes and influencing the formation of state health policy.

The institute also works on the integration of the environment of patient organizations and organizes regular meetings with key health professionals, actively participates in public consultations, and promotes cooperation with patient organizations. The Institute’s scope of work also includes advice and support to non-governmental organizations working for the benefit of the patient.

Read more about the activities of the institute

The Health Network project is funded by the Active Citizens – National Fund Program, funded by Iceland, Liechtenstein and Norway as part of the AEA Grants.

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