What is a patient organisation?

Patient organisations are groups of people who usually represent patients with a particular diagnosis. They can be either patients themselves or their family members. Their mission is to help patients, either professionally or by helping them in their dealings with other actors in the health sector (for example, health insurance companies, but also authorities or even the Ministry of Health). "Patient organisations have an irreplaceable role in our society. Through their activities, they contribute to greater transparency and accessibility of healthcare and help people with disabilities or illnesses to take an active part in the care of their own health," says Radka Ondrušková from Líp a Spolu (Better and Together), a patient organisation helping to improve the lives of people with autism and their families.

The path trodden "from below"

A large number of patients started as informal associations of several people, often family members, brought together by the same diagnosis. In the case of rarer diseases, many were also motivated by the need to obtain, collect and then pass on information about the disease to other families. Now even the law has patient organisations in mind. It clearly sets out the conditions for their formation and defines a patient organisation as a registered association whose main activity is to assist patients and protect their rights and interests, and whose members are usually people with a particular illness or disability, their relatives or their representatives
"Patient organisations have been born out of the need to competently represent the needs of patients to third parties. Since then, they have undergone a significant evolution and today they have an irreplaceable place at the table where issues from the health care, social sphere, but also education are addressed," explains Daniel Kostan from SMÁci, z.s., an organization that brings together families of patients with spinal muscular atrophy (SMA).

Unresolved funding for patient organisations

Patient organisations bring services worth over CZK 188 million to Czech society each year, or CZK 11,000 per patient - this is according to the Analysis of the Value of Patient Organisation Services in 2023, prepared by EY. Despite all this, they have been facing problems and obstacles for a long time.
"These are mostly non-profit organisations and literally "volunteer clubs" where each member contributes his or her energy to the running of the organisation. These activities are not paid for, so patient organisations are constantly struggling to survive and find funds for their operation," says D. Kostan. R. Ondrušková agrees: 'Patient organisations often work with limited material and human resources. Lack of funding and expertise can limit the effectiveness of their work and the possibilities for development," and mentions other pitfalls: "When representing patients' interests, they also face bureaucratic complexity, conflicts of interest and uncertain political support."

The umbrella organization of patient organizations sees it in the same way: 'The Czech Republic can be proud of a well-developed segment of patient organizations that help patients and their families cope with life situations and at the same time save the state's finances by providing services. However, the organisations themselves do not yet have a sustainable system of financing with public budgets, so they have to fight for resources for their continued running every year," says Robert Hejzák, chairman of the National Association of Patient Organisations (NAPO).

What has the EEA Grants 2014-2021 helped?

The Call, or the Small grant scheme of the Health Programme from the EEA Grants 2014 - 2021, was the first grant title that focused directly on patient organisations. The call supported 15 projects - fourteen of which were targeted at specific patient organisations for their activities, professionalisation and awareness-raising campaigns about the diagnosis. The fifteenth project supported the creation of NAPO, an umbrella platform that supports patient organisations professionally, administratively or legally. In addition, a 'pre-defined project' was implemented by the Ministry of Health, which, among other things, maintains a register of patient organisations. During this project, a new space was built in Prague's Vršovice for the needs, meetings and education of patient organisations - the Patient Hub. Other patient organisations were supported through the Active Citizens Fund..

How do the project promoters evaluate the EEA Grants?

"We are happy that thanks to the EEA funds we have managed to establish an umbrella organisation, which did not exist in the Czech Republic for patient organisations before. The National Association of Patients' Organisations (NAPO) supported by the EEA Grants unites the voice of patients and defends their interests more effectively in negotiations with ministries, insurance companies, the pharmaceutical industry and other entities. We perceive the role of umbrella organisations as very important not only for the patient organisations themselves, but for the whole health system," says R. Hejzák from the National Association of Patient Organisations.  "We very much appreciate the helpfulness and cooperation of the relevant staff in the preparation of the project application and the subsequent administration of the entire project," says R. Vondrušková, who, as the NAPO representative, believes that support for patient organisations will not be lacking in the next programming period of the EEA and Norway Grants.
 

Links:

More about Healths Programme: Health Programme

More about the Call to support patient organisations: Call ZD-MGS3

List of supportet projects: Results of the MGS3 call to support patient organisations - Ministry of Health (mzcr.cz)

More about Patient hub: pacientskyhub.cz

National Association of Patient Organisations: silapacientu.cz

EY: Analysis of the value of patient organisation services 2023