On June 17, the AAMDSIF Patient Advisory Council on Clinical Trials (PACCT+) members met in Arlington, Virginia for the second orientation seminar, meeting fellow committee members and learning from two experts about clinical trial design and the state of current MDS research. By their selection and participation, PACCT+ participants are expected to become familiar with clinical science research to ensure their ability to provide informed feedback that would benefit a study’s design and impact.
PACCT+ is a two-year demonstration project to develop and test a program to train patients in basic clinical and health services research concepts. This initiative is funded by the Patient Centered Outcomes Research Institute (PCORI) through AAMDSIF’s PCORI Engagement Award.
Greg Martin, Deputy Director of Stakeholder Engagement with the Patient Centered Outcomes Research Institute (PCORI) kicked off the meeting, speaking about PCORI’s mission – improved outcomes from research guided by patients, caregivers, and the broader healthcare community.
PACCT+ Steering Committee member Dr. Phil Page (an aplastic anemia survivor) served an additional role by also delivering the presentation on clinical trials and clinical trial design.
The PACCT+ Council members then constructed a mock (sample) clinical trial using the principles described in the prior presentation, and built around bone marrow failure clinical scenarios, sometimes using actual approved drugs or ones currently being evaluated in actual clinical trials.
After lunch, Leslie Pettiford, RN, MS, presented an update on current research in bone marrow failure, taking questions from the audience at the conclusion. Then the groups reconvened to present and summarize their proposed trials from statement of purpose through patient consent forms.
Both members and presenters alike felt the orientation met its goal – to bring new council members on board and up to speed with that they need to know to be effective advocates for ongoing research.
“This year will be my 20th as a diagnosed PNH patient. During those years I also participated in a few clinical trials. I know that what is learned in these trials may benefit more people than just myself. When I was asked to join the PACCT+ group, I felt it was an amazing way to continue giving back. We are so lucky to be able to help organizations that want to add the patient's voice - having patient feedback in clinical trials is groundbreaking. Imagine how much more thoughtful and effective each trial may be!” – Heather Rumery, PACCT+ participant.