A note from Patty Huang, MD, blog moderator and PI for CIRP’s Teen Driver Safety Research team: Today, we are pleased to welcome a guest blog post from Chris Gantz, MBA, program manager, Clinical Research Support Office, Recruit Enhancement Core, The Children’s Hospital of Philadelphia Research Institute.
If you were to ask any research study team member what were the biggest barriers to successful project completion, participant enrollment and retention would most likely top the list. With mobile technology and social media creating opportunities to engage with potential participants in ways that were not possible just a few years ago, we are now entering a ‘Golden Age’ for enrolling participants in clinical trials.
An example of a new tool for finding/enrolling subjects is Apple’s ResearchKit platform launched in 2015. This open source software framework was designed to help medical and health researchers gather data more frequently and more accurately from participants using iPhone® apps. Within 24 hours of its launch, a featured app from a Stanford University cardiovascular study enrolled 10,000 people and another group’s app looking at Parkinson’s disease enrolled nearly 8,000 participants within that first week.
These examples of the platform’s participant enrollment are likely extreme since they benefited greatly from being part of Apple’s launch event. As more studies incorporate apps and social media in their planning, enrollment numbers will likely be far less. However the ability to enroll and engage people through mobile devices will allow investigators to interact with their participants in new ways and gather data that would have been otherwise unavailable.
Garnering Public Support for Research
While these new resources are game changers regarding the way study teams are able to interact with participants, they alone will not address the challenges of getting people involved in research. The research community must also work to educate the public about the need for their involvement in clinical trials. At CHOP we say “today’s discoveries are tomorrow’s treatments,” but the reality is that many of those discoveries would not be possible without the support and involvement of the public.
United Parcel Service (UPS) sponsored a survey to learn about volunteerism within its organization and found that the most common reasons why employees do not volunteer are:
- They don’t feel like their efforts make a difference.
- They don’t feel welcomed.
- They lack a background in volunteering.
- They don’t understand the mission of the organization.
- The volunteer tasks are too routine.
- Their efforts aren’t recognized.
- They don’t feel connected to the organization.
I would argue that many of these reasons mirror why people do not get involved in research studies. Even though there are many research groups that do an excellent job connecting with people, the overall research community can, and must, do more to raise awareness of the importance of public support for research to address the issues listed above.
If you are reading this and have ever participated in any type of research, I would like to thank you on behalf of everyone who has benefited from your contribution. If you have yet to participate, please consider getting involved. New CHOP studies that are looking for participants can be accessed here.
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