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Guest Blog: Ken Getz Calls for Commitment and Consistency to Realize Full Potential of Patient Engagement

Ken Getz, director of sponsored research programs and research associate professor, Tufts Center for the Study of Drug Development, Tufts University, offered his insights on patient engagement at CTTI’s 10-year Anniversary Symposium on Tues., Feb. 6. He shares those thoughts here in a special guest blog.

As a veteran observer and analyst of the clinical research enterprise, I am very proud of and amazed by the extent to which the patient engagement movement has touched the entire continuum of new medical interventions development.                                                             

New services have been created to improve the participant experience, including electronic informed consent forms and direct-to-patient clinical trials. Regulatory agencies have established mechanisms to gather input into clinical outcomes most relevant to patient communities. Sponsors are supporting more meaningful end-of-trial experiences, such as the return of plain language trial results summaries and e-clinical data to study volunteers. The movement has mobilized stakeholders and stimulated more collaboration than we have ever seen before.

However, while we see a proliferation of patient engagement initiatives and guidelines, there are few signs of standard and consistent commitment and practice. Almost daily, new entrants offer technology solutions that can create more fragmentation and market confusion. We also see wide variability in receptivity to, and implementation of, patient engagement initiatives. Nearly all organizations have vocalized concerns about the financial return, long-term value, and perceived risks of patient engagement. 

CTTI is committed to helping organizations work through these barriers and obstacles. I have had the privilege of participating in several CTTI projects, including a recent study that quantified the high expected net present value of patient engagement practices for a typical oncology drug development program. 

We must do everything we can to give the patient engagement movement the opportunity to take hold and realize its compelling promise. Only then will clinical research and clinical care best serve the needs of public and patient health.