EHA patient advocacy session: challenges to patient participation in clinical trials

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Published: 3 Dec 2010
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Jana Pelouchová - Diagnoza CML, Prague, Czech Republic
Jana Pelouchová director of the Czech CML patient group "Diagnoza CML” discusses some of the barriers to patient participation in clinical trials and offers the patients perspective on these issues. Access to information, informed consent, mobility issues, travel expenses and language barriers are identified as the main points that must be addressed to increase the number of patients taking part in clinical trials. It is essential that patient advocate groups work together to find the most effective way to let patients know about clinical trials and that “informed consent” should be communicated in language that is much easier to understand by patients. A number of patients are also put off from entering clinical trials by the cost associated with travelling to clinical trials or by the language barrier that must be overcome when enrolling in trials outside their own country. Ms Pelouchová talks about this and also stresses the importance of taking the patients’ perspective into account when designing clinical trials and making decisions regarding treatment.