Interactions between the pharmaceutical industry and patients + patient organisations Flashcards
Why is it important for the pharmaceutical industry and patients/patient organisations to work together?
The pharmaceutical industry researches and develops medicines for patients to improve their lives.
It is important to work in partnership with patients to understand disease and treatment pathways and areas of unmet need, and to support patients to take their medicines safely.
Patient insights are critical to help transform scientific breakthroughs into clinically meaningful medicines.
What do patient organisations do?
advocate on behalf of patients, often in a particular disease area. They may fund medical research and/or may provide information and support for patients and/or may influence health policy on behalf of patients.
What are expert patients?
patients who have become skilled and knowledgeable in the management of their disease. Some patients also develop expertise in understanding medicines research and development, clinical trials and the regulatory process.
What are the 3 elements of patient engagement?
Patient voice
Patient experience
Patient outcome
Describe how interactions between patients and drug companies must be open and transparent?
Financial and non-financial support provided to patient organisations must be disclosed
Contractual agreements must be in place describing the purpose and nature of interactions
What are the key objectives of EUPATI
Develop and disseminate objective, credible, correct and up-to-date public knowledge about medicines R&D
Build competencies and expert capacity among patients and the public
Facilitate patient involvement in R&D to collaborate in academic research, industry research, regulatory and HTA authorities and ethics committees
Why is EUPATI needed for patients?
seek up-to-date, credible, understandable information about innovation in treatments
are largely unaware about clinical trials and the drug development process
Why is EUPATI needed for patient organisations
have an increasingly complex and professional task of advising on protocol design, ethical review, regulatory and value assessment
are often self-taught and have gaps in the education and training required to participate as an equal partner in medicines development
Name some UK initiatives leading patient engagement
National Institute for Health Research (NIHR)
INVOLVE
Association of Medical Research Charities (AMRC)
ABPI Patient Organisation Forum
