Patient Perspective competition: Lina Buzermaniene is a Lithuanian patient representative participating in the European U-BIOPRED project.
Lina makes an important contribution to the ethics committee, allowing the scientific members of the project to consider factors they are not aware of, specific to the patient’s perspective. “I believe it is extremely important that patients participate in issues that are important to their health.”
Using another patient’s phrase: “nothing about us competition, without us”.
Simply put, patients should take part in research as it directly affects their diagnosis and treatment as well as the future treatment of other patients. Participation in research projects allows patients to learn about clinical trials and to disseminate this information among other patients.
“It was initially difficult to approach the project without any knowledge of clinical trials or how medical research works, but over time I gained knowledge and confidence. Patient participation is essential for transparency, dissemination and more fruitful discussions on how to use project results ”.
For healthcare professionals
Among the possible advantages:more in-depth knowledge of the pathology and coexistence with the pathology competition patients who are more satisfied with the therapies and more likely to follow them, resulting in an optimization of the use of resources and an increase in the quality of care offered by doctors to patients.
- more relevant research, which ensures truly useful results for patients
- improvement of recruitment for research by adapting the development of the research study to the needs of patients
- improved dissemination of research results thanks to the active organization of patients and patient groups
How is PPI spreading in Europe?
European health systems are showing a growing interest in learning about and introducing PPI competition, despite the fact that the level of official recognition varies considerably from country to country. Here are two examples of PPI in Europe.
United Kingdom: Institutional Case Study INVOLVE was founded in 1996 in the United Kingdom to promote active public participation in the National Health Service (NHS), public health and social care research.
It is one of the few government-funded programs of its kind
As a national advisory body, its role is to gather knowledge, opinion and experience in the field of public participation in research, with the aim of advancing such participation as an integral part of the procedures pasq by which research is identified, established. priorities, is conducted and disseminated.
The Netherlands: case study on a patient organization Since 1997, the Lung Foundation Netherland has involved patients in research and health policy. In 2007, a dedicated advisory committee was founded, made up of patients with lung diseases.
This committee participates in the development of standards and guidelines relating to care pasq, the translation of these guidelines into simplified language, the determination of research priorities, the development of criteria for the evaluation of research from the patient’s perspective, the evaluation of research proposals and monitoring of existing research projects.