During the Patients as Partners Conference earlier this month, we had the opportunity to discuss new ways to help reduce the patient burden for clinical trial participation.

There were many different tools brought to light throughout the two-day event, with a common theme of collaboration and eliminating the barriers to access for patients. It was so exciting to see so many different representatives from large Sponsor organizations, CROs, patient advocacy groups and event regulatory share a common goal and focus.

On the first day of the event, Ken Getz, Director of Sponsored Research Programs & Research Associate Professor at Tufts Center for the Study of Drug Development, shared findings from the Center for Information and Study on Clinical Research Participation’s 2017 Perceptions and Insights Study.

The annual study looks at overall public and patient attitudes toward clinical research and identifies areas for improvement to increase awareness and participation. The three areas where patient engagement is being most hindered are:

  • Healthcare service providers as facilitators of engagement
  • Participation burden
  • Plain language trial results disclosure

In looking specifically at the patient burden, the top five mentions for what patients liked the least about their experience included:

  • Not knowing if I was getting the investigational treatment
  • Location of the research center
  • Time consuming study visits
  • Compensation was not enough given study demands
  • Study procedures were too cumbersome

Simplifying a patient’s ability to travel and properly compensate or reimburse them for their time and inconvenience is a very simple solution to relieving these real burdens. In fact, many patients who attended the event spoke about how critical this was for the patient experience – and many were ClinCard cardholders!

Compensation, travel and reimbursements should not be a ‘nice to have’ – it should be standard in the patient experience.

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