Patient centricity has become an essential element of modern healthcare – in part thanks to the tenacity of patients and caregivers. They have advocated for a place at the table with sponsors and researchers in the drug development process, informing clinical and therapeutic research with much-needed patient voice and perspective.
We see this play out across life sciences, and this is precisely the case for Sharon Terry and her husband. Upon discovering that their two young children suffered from pseudoxanthoma elasticum – a rare genetic disorder affecting connective tissue, skin, eyes and blood vessels – Terry saw first-hand why a patient’s perspective is necessary for better research.
In a recent NPR article Terry explains, “Researchers came and took blood from us and our kids.” Another set of researchers wanted to take blood just a few days later. “We didn’t understand why they weren’t sharing. And we didn’t understand why they weren’t working together… We look at what matters to us. And not some biological pathway that absolutely is important but isn’t going to give us the answers we need.”
This is the kind of situation that prompts patients and caregivers to make changes to the clinical research landscape. Terry and her husband not only leveraged Harvard University facilities to find the gene responsible for pseudoxanthoma elasticum; they also developed a diagnostic test based on the gene, and founded the Genetic Alliance patient advocacy group.
Sharon Terry represents a success story – where a patient or caregiver works actively alongside other healthcare professionals to provide for patients’ needs – but achieving and maintaining patient centricity in the long run is still more complex. Read the entire article here, and download our Patient Centricity eBook below.