Guest Expert August 2011: Karen Anderson—How Do You Keep Participants on Long Term Follow-Up?
Originally posted by: Linda Parreco, AccrualNet Co-Moderator, on the former AccrualNet site on Aug 31, 2011.
Please welcome our guest expert for August, Karen Anderson of Cancer Research And Biostatistics. Karen worked as a Retention Manager on the Carotene and Retinol (vitamin A) Efficacy Trial (CARET) at the Coordinating Center for 12 years. CARET, a lung cancer prevention trial, had six study sites that recruited over 18,000 male and female adult participants who were either heavy smokers or had asbestos exposure. Karen currently works on the SWOG study, Selenium and Vitamin E prostate cancer prevention trial, SELECT, as a Retention Manager at the Coordinating Center. SELECT began in 2001 with over 400 sites which recruited over 35,000 men with 18% African American. Prevention trials are often long term studies with very large participant populations being studied over 7 or more years. The retention challenges are daunting and we appreciate Karen’s willingness to share her wealth of experience on this important topic. Welcome Karen!
Karen Anderson's Post:
How do you keep participants on long term follow-up? Can you imagine signing a consent that says you agree to take two supplements every day for 7 – 12 years? Why would you want to do this if getting paid to do it is not an option? Finding money and staff time to support retention is even more of a challenge. Large institutions have infrastructures but the layers of approval can be overwhelming. Small sites have little to no infrastructure so how can one person do it all? You must plan for retention from the first day of recruitment which means if you are writing a grant, consider budget needs and staff time. I’ll gladly share 22 years of experience with many successful and not-so-successful strategies gained from just 2 long term prevention trials which totally accrued over 53,000 participants in over 400 sites. Some retention strategies included a variety of retention items:
- Utilizing a national committee of researchers and CRAs
- Creating videos
- Putting on social events
- Providing newsletters
- Maintaining a participant advisory board
Want more details? Respond to this post and share what works and what doesn’t work for you?