Patient Engagement

Patient Engagement is one area where DIA has led the way in value creation through our content. DIA’s mission in PE is to be a facilitator of cultural change in the drug development industry by demonstrating the value of the integration of patient perspectives across the lifecycle.

In 2014 DIA began a research effort on patient engagement in collaboration with Tufts University. Three different research studies were conducted, focused:

Phase 1. 2014-2016. Metrics

The DIA research, conducted in partnership with Tufts University, found that half of pharmaceutical and biotech companies surveyed implementing patient-centric drug development initiatives; but measurement and success vary widely. However, barriers such as risk tolerance, lack of staff, time, and budget have constrained implementation. Furthermore, quantifying results is challenging as there is limited comparative analytic data that support specific methods of patient-centricity. Several publications, a Considerations Guide , and a visual representation of the patient engagement landscape .

Phase 2. 2017-2019 PEPCEI

The Patient Engagement Preparedness, Capabilities, Experience, & Impact research established and validated a patient engagement assessment program that identifies strong leadership practices, areas to strengthen, and areas where patient-focused development activity will continue to evolve and provides credible evidence to stimulate company-wide and functional adoption. Additionally, benchmark metrics from participating companies were calculated. The outputs from this study were a 500-question survey and publications.

Phase 3. 2020-2022. PECQ Tool and Outcomes

This study utilized a working-group approach to streamline the PEPCEI assessment and adapted to create a new digital tool, the Patient Engagement Capabilities Questionnaire (PECQ). Additionally, data was collected to understand how PECQ score might be associated with outcomes & patient experience. Findings included an inverse relationship between the PECQ score and 2 key outcomes: protocol deviations and the number of adverse events. The PECQ is now being developed for companies to utilize as a survey to monitor improvement and benchmark against other organizations.

Think Tank: Coming Out of the Dark: A Wholistic Approach to Therapeutic Development

The development of efficient solutions for patients is impeded by a multitude of challenges that require collective efforts from researchers, policymakers, and other stakeholders. By addressing issues such as drug repurposing, biomarker validation, patient involvement, and regulatory clarity, the healthcare industry can pave the way for more effective treatments and improved patient care. These obstacles have proven to be significant roadblocks, impeding progress towards innovative treatments and therapies, with life-altering implications for patients.

At the margins of the DIA Annual Meeting 2023, a multistakeholder group participated in a solution room to discuss and explore what is needed to prepare for the future state of therapeutics development. Participants in the Solution Room to discuss and summarize the challenges and benefits of each therapeutic class, prioritize which challenges are most impactful for decision-making in therapeutic development, and brainstorm potential mechanisms to overcome barriers.

To access the Outcomes report, click here.

To learn more about DIA’s Research projects and think tanks, contact science@diaglobal.org