The results of a survey by the inVentiv Health Public Relations Group
L
he patient organizations are not convinced that pharmaceutical companies are doing everything in their power to help patients. This is what emerges from a report published by the inVentiv Health Public Relations Group, which therefore reveals how suspicious patients are about the commitment of the drug industry, due to experiences such as seeing their support evaporate when the commercial patent protection on a drug expires.
Elizabeth Pollard, executive director of the World Parkinson Coalition, said that if pharmaceutical companies were serious about advocacy for patients, "they could make an effort to stay engaged and demonstrate that their involvement is not just about profits." The 43 organizations surveyed, which include organizations such as the Lung Cancer Alliance and Cure Duchenne, found that pharmaceutical companies too often confuse social-media interactions with patients with real relationships, and that a real partnership involves talking about a range of topics, including the progress, successes and failures in the drug development process.
This kind of transparency would in the long run be a demonstration of good will, the associations underline. Patient groups have indicated that they want to be active stakeholders in drug development because no one else knows the needs of patients like them, data that could be used to drive clinical trial endpoints. Finally, the associations indicated that they could improve themselves, for example through collaboration with other patient groups, rather than trying to 'beat' each other for attention and funds from industry.
