We have applied rigorous qualitative research methods used in human and social sciences to provide novel patient-centered perspectives and insights on diseases and treatments and explore which outcomes are most meaningful for patients. Our research was based on in-depth patient (and caregiver) interviews and qualitative analysis of these interviews. Patients were also engaged in the development of the study documents (for example the study protocol and interview guide) and in the interpretation and reporting of the results. We have applied this method in projects focusing on several conditions including oncology, urology, ophthalmology, gynecology and CNS diseases.
The goal of this initiative was to scientifically collect and report this unique perspective that the patients (and caregivers) offer to describe essential evidence in the drug development process and HTA decisions. We gathered key outcomes such as the impact of the disease on day-to-day life, limitations of existing treatments, expectations from new technology and the most meaningful outcomes for patients and their caregivers. Benefits and unwanted effects experienced with the new technology, the balance between unwanted effects and benefits, and the importance of these effects for the patient / caregiver were also elicited.
Problems addressed by Initiative
Our initiative addresses two main issues: 1/the lack of patient / caregiver perspective in the drug development and HTA decision-making processes; and 2/the lack of rigorous and scientific methods to obtain and disseminate patient perspective.
Involving patients in the lifecycle of medicine development