IQVIA says understanding patient groups is key to modern drug development

Patient groups play an important role in drug research according to research by IQVIA, which says increasingly such groups act as expert scientific and data partners to industry.
The research services firms shared its views on patient groups in a report this month, arguing that while trial sponsors and clinical research organizations (CROs) have started building relationships with such organizations more needs to be done.
“As life sciences companies increasingly aim to be patient-centric, they have partnered with patient organizations to better understand what patients experience along their care journey, advance research, and drug development, and improve clinical trial designs to better meet patient needs.
“However, despite shared interests, collaborative relationships between the two stakeholders have had their challenges,” the authors write.
At present there are more than 3,000 patient groups in the US, with approximately 593 or 18% focusing on rare diseases.
Many patient organizations act as donors — providing grants or the use of intellectual property and data assets to life sciences companies or academic parties, particularly small and emerging companies.
21st century cures
So, knowing how patient groups work has become increasingly important for drug developers according to the IQVIA authors, who also recommend that firms try and leverage the expertise such organisations amass in their research programs.
“Understanding the role and perspectives of patient organizations in these partnerships can help life sciences companies forge better and more productive collaborations.
“As patient organizations have expanded the scope of their work — acting as expert scientific and data partners to industry — understanding the breadth of what they offer can open new opportunities for collaboration.”
IQVIA’s observations are in keeping with information set out under the 21st Century Cures Act, which stressed the importance of including patient input and experience in drug development programs.
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