Research Participant Panel at July 2021 CRP Monthly Meeting
On July 13th six research participants shared their experience in participating in studies which included the COVID-19 vaccine study, condition-specific studies and even choosing not to participate in certain studies. They offered insights that reflected each of their unique research journeys but highlighted some common themes, including 1) the need for more awareness and education around research and the results of research and 2) the need for greater and more diverse recruitment efforts. You can see the panel here.
There is also a bonus interview with a teacher/mom COVID-19 vaccine study participant (Laura Palmer who is a teacher, as well as a mom of an immunocompromised son with a rare condition).
Panelists shared their answers to the following two questions about what matters most to them:
When thinking about engaging with potential research participants (patients/family/community), I think it is important to focus on…
Anna: their (the participant’s) stories because everyone has a different experience with medical treatment and research in the past.
Amanda: giving enough information about the risks and outcomes of similar studies in the past because knowing outcomes, good or bad, can help an individual/family make their decision on if it is right for them.
Melanie: the recruitment aspect so that opportunities reach a diverse group of individuals. The research participant opportunities should be extremely accessible and easy. Young people (like me), a lot of the time, are not aware of the clinical trial opportunities. With more awareness of the opportunities and education, the engagement likely will rise.
Camilla: the end result/bigger picture because I was able to participate in something that is valuable and made a difference – that the vaccine was approved. It is powerful if they could understand that they become part of a bigger cause.
Jacob: On the greater impact because it can show the percentages of about how many people it affects/helps.
One thing that I think could help improve the research participant experience is…
Jacob: On-boarding…increasing awareness of research studies.
Melanie: Incentives for advocacy beyond the study. If the participant is given materials to further educate friends, family, and their community sharing their experience, statistics, or just simply their general experience in a clinical trial, that can make a huge impact.
Isabel: More knowledge and education of the test/study results.
Amanda: To make sure the participant/family is in a good place to be approached. (speak with medical staff prior to approaching in patient families)
Anna: Consistent follow-up regarding how the results of the research are used.
RPAC is Seeking Adolescent (11-17 year old) CCHMC Research Participants.
Know of a research participant who you think would be comfortable sharing their thoughts/opinions to help improve research? If so, we are seeking 11-17 year old participants from across the research hospital spectrum to join our monthly virtual RPAC meeting (4th Thurs of month 5:30 – 7pm)? Contact Julie Wijesooriya for more information or to refer someone, julie.wijesooriya@cchmc.org.
