For my bachelor Pharmaceutical Business Administration, I had the opportunity to conduct a six month research internship at the Medicine Evaluation Board (MEB). The main topic of the research was “patient participation within the National Scientific Advice of the MEB”.
The MEB gives National Scientific Advice to different (mostly) pharmaceutical companies. During these scientific advices the MEB mainly gives feedback on future studies that the pharmaceutical companies want to conduct. Sometimes the input from a patient representative can be helpful and can provide the MEB with new insights. The aim of my research-project was to study which factors are important in starting patient involvement at National Scientific Advice at the MEB.
I have conducted various different interviews with both assessors of the MEB and patient representatives of different organizations. During these interviews I have studied different factors that can play an important role in being able to involve patient representatives into National Scientific Advice. In total there were six factors labeled as important and helpful for the MEB to take into account when they want to involve patient representatives in the future.
Finding the right people to involve
According to both interviewed parties there is a need to only include patient representatives that meet a certain profile (knowledge about the disease and being able to speak-read and understand English) but, besides the right patient representatives, there is also a need to include the right employee of the MEB. The patient representatives would like to work with an employee that is neutral and also motivated to work with patient representatives.
Choose a suitable scientific advice
Since the MEB already has a lot of knowledge about different diseases, it is not always necessary (or feasible) to include a patient representative into every scientific advice. Good consideration and consultation between the patient representatives and employees of the MEB is important.
To make sure that the opinions and expectations of both parties are the same, before staring the collaboration, an introduction and preliminary discussion is necessary. During this collaboration step it is also important that al the paperwork towards confidentiality has been signed, since the information discussed during the scientific advices is confidential.
To make sure that the patient representatives can give their clear vision about the scientific advice application, it is helpful to point out a specific mentor. This mentor can help the patient representatives with any problems or questions. A better formulated vision of the patient representatives can help the MEB in formulating a better advice for the company in the end.
Almost all assessors that were interviewed during this research mentioned that time could be a problem. Time investment on the side of the MEB, especially in the beginning of this process, will be necessary. Conducting a couple of collaborations need to reveal if the benefits weigh up against the expected time investments.
To complete the collaboration, the last step will be the implementation of the vision of the patient representatives during the actual meeting between the assessors and the pharmaceutical company. Both interviewed parties stated the importancy of the presence of the patient representative during this meeting. In this way the patient representative can also play a role in the discussion between the pharmaceutical company and the MEB.