Clinical research is one of the most complex, yet rewarding missions of Johns Hopkins Medicine. This past year over 600 research teams across Johns Hopkins Medicine, from our academic sites to our community-based sites, have contributed in many ways to our understanding of what treatments work best for patients. We have created an integrated set of annual reports from the programs that support clinical research to let research teams know how we can work together.
Clinical trial activity continues to increase at Johns Hopkins with impressive growth in the last year.
Active Clinical Trials Consented Patients
2017 Q2 1,132 13,408
2018 Q2 1,237 17,511
We are particularly pleased that the number of research participants who just enrolled in the clinical trials has also increased. Comparing 2017 Q2 to 2018 Q2 there was a 16% increase in the number of research participants who had recently consented to join a clinical trial.
Even with this growth, our measures of research participant satisfaction are particularly gratifying. For the past three years, every 6 months we send out surveys to 500 randomly selected individuals who have recently participated in a clinical trial as classified in CRMS. The survey was designed in partnership with our ICTR Community Research Advisory Council. The results are posted on the ICTR website for the public to review (https://ictr.johnshopkins.edu/research-participant-surveys/). Highlights of these results include:
- 75% of research participants rate their overall experience as a 9 or 10 on a ten point scale
- 96% would recommend to friends or family they should join a research study
- 97% reported the consent form prepared them for the study
- 92% reported they were always treated with respect and courtesy by the research team
- 88% reported that they usually or always they felt like they were a valued partner in the research process
There are areas where we can still improve our performance with research participants. Research participants consistently comment on longer than expected wait times before or between research procedures. They also would like to learn more about the results of the study. A small, but persistent number, of research participants are commenting on higher out-of-pocket costs related to the usual care component of clinical trials and delays in receiving reimbursement or payment for their research participation.
All of us should be proud of how we work with and care for research participants, particularly our research recruiters and coordinators. None of us should hesitate to recommend patients consider enrolling in a clinical trial.
There are many research offices than can help research teams. Please review these annual reports to determine if you are using all of the resources and expertise that is available. If you have suggestions about how these programs might function better, please send an email to [email protected].
Thanks for all you do to create new knowledge that will improve the care and outcomes of patients for years to come.
Links:
2018 Annual Reports
https://ictr.johnshopkins.edu/about-us/annual-reports/
Research Participant Survey Results
https://ictr.johnshopkins.edu/research-participant-surveys
-Daniel Ford, Director, Institute for Clinical and Translational Research, Vice Dean for Clinical Investigation
