DIA-Tufts CSDD Study: Patients at the Center of Research
A priority theme for DIA stakeholders increasingly revolves around the integral role patients play in influencing treatments being developed to address unmet medical needs. While general consensus accepts that patient engagement is beneficial, significant barriers to patient-centricity exist that could potentially be overcome by quantifying the value of patient input and defining a process to guide organizations in the ‘how to’ of patient-centricity.
After committing to explore the question - How can we quantify the benefit of patient-centricity in drug development? - DIA selected DIA Fellow Dr. Ken Getz and the Tufts Center for the Study of Drug Development (CSDD) to partner with us to on the first phase of a research project that included working with group participants from 17 companies, including traditional pharmaceutical companies, small biotechnology firms, CROs, and other stakeholders.
The objectives of phase 1 of the study were to:
- Quantify the impact of patient-centric initiatives using Return on Engagement metrics looking at retrospective data and develop a metrics toolkit
- Collect real examples of measurable benefit to drug development from patient involvement
- Catalog patient-centric initiatives and assess adoption
- Characterize implementation and management models
- Identify and assess current guidances and frameworks on patient-centricity
DIA and the Clinical Trials Transformation Initiative (CTTI) conducted a joint survey in 2014 with multiple stakeholders.Learn More
DIA and the Patient-Centered Outcomes Research Institute (PCORI) collaborated in 2015 to develop a visual model of Patient Engagement in Benefit-Risk Assessment through the Medical Product Life Cycle.Learn More
European Patients’ Academy
The European Patients’ Academy on Therapeutic Innovation (EUPATI) provides open-source education on medicines development and the role of patient engagement in the process.Learn More