George Vlachogiannis: The 7 Key Drivers of Participant Engagement in Rare-Cancer Genomics
George Vlachogiannis, Managing Editor of Cancer Control at Sage, shared a post by Count Me In: Patient-Partnered Research on LinkedIn about a paper by Vinayak Venkataraman et al. published on Sage Journals:
“Supporting Participant Engagement in Cancer Genomics Research in Rare Cancers: A Qualitative Study of Patients, Caregivers, and Advocates
A qualitative study from the Count Me In Osteosarcoma and Leiomyosarcoma projects published in Cancer Control identifies seven concrete drivers of participant engagement in rare-cancer genomics – motivation, respect, trust, inclusivity, relationship, engagement, and empowerment – based on interviews with patients, caregivers, and advocates.
The authors translate these themes into actionable steps (proactive, transparent communication; visible privacy safeguards; inclusive, low-barrier operations; adolescent-tailored approaches) that research teams can implement now to boost recruitment, retention, and meaningful partnership, ultimately accelerating discovery for understudied cancers.”
Quoting Count Me In: Patient-Partnered Research’s post:
“Congratulations to our colleagues and research partners on this new publication!
How can we build trust and respect with cancer communities in rare cancer genomics? A new study from our Osteosarcoma and Leiomyosarcoma projects highlights seven themes from motivation to empowerment that support meaningful participant engagement. Read more about how patients, caregivers, and advocates shape patient-partnered research.”
Title: Supporting Participant Engagement in Cancer Genomics Research in Rare Cancers: A Qualitative Study of Patients, Caregivers, and Advocates
Authors: Vinayak Venkataraman, Lily Weber, Lauren Fisher, Andrew Khalaj, Eirian Siegal-Botti, Diane Diehl, Katherine A Janeway, Suzanne George, Jennifer W Mack
Read the full article.
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