Patient involvement at ASH 2016 and beyond

Jan Geissler, Co-founder of the CML Advocates Network, highlights the importance of patient involvement at the American Society of Hematology (ASH) Congress 2016 in San Diego, CA. This was his 9th ASH Congress, and he starts by pointing out that the number of patient advocates attending this meeting and asking questions in sessions has increased substantially each year. However, he argues that there has not been much progress in involving patients in the program and giving them a voice at this congress, which is still seen as a conference for doctors. Jan Geissler compares this to the European Hematology Association (EHA), whose meetings incorporate patient advocacy tracks as well as having patients involved in scientific sessions. In addition, capacity building meetings are held at EHA congresses for patient advocates to develop scientific understanding. He suggests that ASH should do more to integrate patients into the conference program. Outside of the scientific program, pharmaceutical investigator meetings held at the congress benefit from the different perspective provided by patient advocates. Jan Geissler discusses that while all pharmaceutical companies highlight the importance of patient involvement in their mission statement, many do not consider what this entails, such as input from individual patients, patient representatives, patient advocates or patient experts. He highlights the work of the European Patient Academy on Therapeutic Innovation (EUPATI), which empowers patient advocates through training and education.

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