The Association considers it of great importance that patients are involved at all stages of drug development.
Patients are indispensable in the development of new drugs and vaccines. Their role in clinical research alone makes patients’ voices indispensable. Their participation in clinical trials allows for research into side effects and the development of understandable leaflets and packaging. Like no other, patients have experience in the winding labyrinth of care. The Association Innovative Medicines therefore considers it of great importance that patients are involved at all stages of drug development. In various ways, the Association is actively working towards this.
Dutch patients are waiting longer and longer for new, approved drugs. Often it takes hundreds of days after registration before a drug is available to the patient. This can and must be faster. The Association has therefore started the campaign #backto100, to reduce the waiting time after drug registration from more than 500 days to 100.
There is a need for better patient involvement. Patients are indispensable in the development of new drugs and vaccines. To give them a voice, the Association supports patient organizations to be a full and independent partner for all parties in healthcare. For example, the Association is a partner of the EUPATI NL training, the Dutch version of the European Patients Academy around research, innovation and development of medicines. The training is made possible in part by financial contributions from ZonMw, PBL support and eight innovative drug companies.
The Association encourages knowledge exchange between patient organizations and our members. For example, we are working on a method to get patients’ needs on the research agenda of scientists.
In addition, the Association considers it important that patient organizations are involved in the drafting of, for example, treatment guidelines and the establishment of patient registries (registries). Guidelines form the basis for clinical decision-making in the consulting room. Of the approximately 500 professional guidelines, about 50 are updated each year.
Diseases don’t sleep. They change and cause pain and suffering to patients and their loved ones. With #Wewontrest, the drug industry underscores its commitment to the development of innovative medicines. Drug companies also continue to work in 2022 on the new drugs that give patients new and better life chances.
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