Haematology Times- EHA role of Patient Advocacy

At the 15th Congress of the European Hematology Association, three speakers discussed the patient-specific challenges of the clinical trial process and offered potential solutions to overcome them. The speakers attacked the issue from all sides, as each represented a different perspective: that of the clinician, the pharmaceutical industry, and the patient. 

Jana Pelouchova, of Diagnoza CML in the Czech Republic, represented the patient perspective. She began by saying that patients must understand their disease so they can make informed decisions regarding clinical trials. Patients need guidance from experts as well as from other patients, and this can be achieved by the creation of more patient advocacy groups. 

“The patient advocacy groups also advocate and lobby for access to treatment and more patient-centric regulation,” Pelouchova said. “In fact, this is an everyday practice, bringing [the] patient perspective to clinicians and collaborating with clinicians and industry, for instance, on patient information, trial design, and protocol.”

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