The Pistoia Alliance is calling for greater collaboration between biopharma companies and research-led patient organizations and charities in the early phases of R&D.
After holding its annual European conference, not-for-profit pre-competitive collaboration organization Pistoia Alliance identified the need to urgently restructure around patient-centricity. The aim is to ensure the insights of patients are embedded in drug development programs from early in the process.
“Working together will build trust in the biopharmaceutical industry by making sure patients can input into the co-design of research and services from an early stage. This will ensure drugs and devices that reach patients are relevant to their needs, are more affordable, and do not duplicate existing efforts,” said Thierry Escudier, strategic theme lead, Pistoia Alliance.
Escudier sees a particular need for greater collaboration in the early phases of R&D and the clinical development setting. As Escudier sees things, incorporating patient inputs at those stages is key because the insights will impact the entire future drug development path.
Decisions made by researchers and investigators in early-phase R&D have “a huge impact on patients,” said Escudier, so it makes sense to make that stage in the process a focal point for patient-centricity. In practice, Escudier sees that thinking manifesting in collaborations that strengthen relationships between patients and pharma.
“All stakeholders must work together. This will include biopharmaceutical companies and study sponsors writing protocols, service providers and CROs, and vendors developing patient monitoring devices. Crucially, we hope to see far greater collaboration between biopharmaceutical organizations and research-led patient organizations and charities, so that products and clinical studies are designed around patients,” said Escudier.
The plan is to increase shared decision-making, as well as the sharing of best practices, learnings, and data. Through those changes, Escudier thinks “the patient burden will be greatly reduced.”
At least some industry executives are on board with the changes. Talking on a panel at the Pistoia Alliance’s European conference, Thomas Hach, executive director of patient engagement cardiovascular, renal, and metabolism at Novartis, made the case for listening to patients.
“Patients will be the biggest disruptors in health care, now and in the future. We better listen to them, and really listen to them. We need to show the impact and the value that data generates for participants in a trial, and we have to do that early. Because sometimes we do that too late, and we can’t properly take the advice of patients,” Hach said.
