Healthcare stakeholders agree that patients should be at the center of the healthcare system—starting from prevention, through research and development, regulatory and health technology assessment (HTA) processes, to service planning and outcome measurement. Medicines are essential tools in the treatment and cure of diseases. Their application, effectiveness, and safety play a crucial role in patient recovery, experience, and disease outcomes. In this context, developing patient-centered guidelines, involving patients in the development and use of medicines, and ensuring that various collaborations and partnerships serve patients' interests are all key to placing patients at the heart of healthcare.
AIPM’s definition of a patient organization: A civil organization primarily consisting of patients and caregivers that represents or supports the needs of patients and caregivers. Operating within the healthcare sector, its objectives include assisting patients and advocating for their rights and interests. A patient organization may act as a client in administrative procedures if stipulated by law.
ABEP (AIPM and Patient Organizations Collaboration Platform)
The AIPM and Patient Organizations Collaboration Platform provides a forum for open exchange of initiatives, information, and perspectives between patient organizations and the industry on current issues affecting patients. Our goal is not to create joint positions but to ensure that patients' opinions and viewpoints are as well represented as possible in the development of AIPM’s initiatives and practices. Additionally, the platform offers industry members an opportunity to discuss pharmaceutical research and development, as well as other industry-related practical aspects, with patient organizations.
ABEP's long-term goal is to ensure that patients and patient organizations are increasingly involved in every stage of a medicine’s lifecycle—from research and development to various health economics and policy issues, including HTA, access to medicines, and pharmaceutical funding. To foster a patient- and outcome-centered healthcare system, ABEP is open to dialogue and discussions beyond its own framework, engaging with policymakers and leaders of the Hungarian healthcare system to address key healthcare topics. Our focus is on amplifying the diverse perspectives of stakeholders and ensuring opportunities for interactive debate.
Research results
The social and healthcare significance of patient organizations is a well-researched area. These organizations not only provide essential support to patients and their families but also actively contribute to the efficiency of the healthcare system and the well-being of communities. However, our knowledge is still limited regarding the economic value of these activities and functions.
AIPM has set out to quantify the economic value that patient organizations contribute to the economy. Through this initiative, our association aims to highlight the tangible, measurable financial impact of their work. The resulting research demonstrates how these organizations help reduce public healthcare expenditures and enhance healthcare efficiency through activities related to prevention, education, care coordination, and the preparation of clinical trials, among others.
If you would like to learn more about the economic value of patient organizations' activities and their specific impacts, you can read the detailed research findings in the PDF document below.
Patient Organization Academy
In 2023, AIPM launched its first Patient Organization Academy training program, whose inaugural class gained a wealth of useful knowledge. The Academy aims to provide comprehensive support to Hungarian patient organizations, assisting their long-term development. Through its programs, it offers support in strategic planning, communication skills development, improving the quality of internal processes, and increasing transparency in financing. Additionally, the Academy helps organizations understand pharmaceutical financing systems and legal obligations, thereby contributing to more effective operations and the achievement of their goals.
AIPM will continue this important work with patient organizations in the future. We plan to provide application opportunities and access to training materials on our website for upcoming classes. Our goal is to make the Academy’s support and professional assistance accessible to even more organizations.