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Use of the Internet to Recruit Study Participants: One Size Does Not Fit All (Beta-Version of Presentation). ORR Luncheon September 17, 2009. Lawrence J. Appel, MD, MPH Professor of Medicine Welch Center for Prevention, Epidemiology and Clinical Research Johns Hopkins University - PowerPoint PPT Presentation
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Use of the Internet to Recruit Study Participants:
One Size Does Not Fit All(Beta-Version of Presentation)
Lawrence J. Appel, MD, MPHProfessor of Medicine
Welch Center for Prevention, Epidemiology and Clinical Research
Johns Hopkins UniversityDisclosures and conflict of interest: None
ORR Luncheon September 17,
2009
Alternative Topics
• What can you expect (and what can’t your expect) from your PI?
• Recruiting participants: Better (or worse) than ever
• Recruitment and Retention Journal Club
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Is Appel Qualified to Give this Talk? (Maybe)
• Use the internet at work and home (a lot)• Recruit participants ( > 3,000)• Constantly thinks about novel approaches to
recruit participants• Used the internet to recruit in 5 trials
Conclusion: he’s no less (and probably no more) qualified than anyone else on Monument Street
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Outline• Context• Types of internet-based strategies• A tour of websites• Where’s the beef (data)?
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Context
• Use of web is commonplace and increasing, overall and in key, often high risk subgroups
• Web is replacing paper
– Postal mail– Newspapers
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Context
• Burgeoning number of recruitment websites– Trial-specific websites– Disease-specific websites– Recruitment search engines
• National (nonprofit, for-profit)• Local (home institution)
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Use of the Internet in Studies
Use of Internet to:
Examples Recruit Provide Therapy
Collect Data
Just Recruit Simple survey or typical in-person trial
(e.g. Cancer Rx)
√
Recruit Plus Collect Data
In-person trial with some q’naire data
over web
√ √
Recruit Plus Provide Therapy
Trial with at least 1 web-based therapy (e.g. wt loss)
√ √
Completely Web
Trials of HIV prevention, Smoking cessation
√ √ √
Enrollment Process for In-Person Trials: Traditional vs
Web-enhanced Approaches
StepTraditional Approach
Web-enhanced Approach
1st: make candidates aware of study
Mailed invitation, flyer, newspaper ad
Also by email broadcast, web banner, listserv
2nd: assess basic eligibility
By phone 1st - Over website2nd - By phone
3rd: complete screening
In person In person
4th: randomize In person In person
Two Types of Individuals
• Unengaged person (unaware of your study)– Goal: make person aware of and potentially
interested in your study
• Engaged person (actively looking for a study)– Goal: make it easy to find your study and start
enrollment process
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Websites for the ‘engaged’ individual
Basic, Information Only Web Site
Trial: OmniCarb
http://www.omnicarb.org/index.html
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
POWER Trial: Mailed Brochure, then Registration Website
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
www.powerhopkins.org/registration
For-Profit Search Engine
Clinical Connection Website
http://www.clinicalconnection.com
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Non-Profit Search Engine
CISCRP (Center for Information and Study on Clinical Research Participation)
http://www.ciscrp.org/
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Non-Profit Search Engine
Clinical Trials Registration Site
http://clinicaltrials.gov/
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Search for Trials at Hopkins
Home Page of Hopkins Medicine
http://www.hopkinsmedicine.org/
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Search for Trials at Vanderbilt
http://www.vanderbilthealth.com/main/
https://www.vanderbilthealth.com/clinicaltrials/
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Internet Strategies to Make Initial Contact with the ‘Unengaged’
• Intranet newsletters (e.g. Inside Hopkins)• Broadcast emails to prior participants• Electronic mailing lists (EML)
– Single message to the list address (e.g. LISTSERV)
• Moderated• Unmoderated
• Bulletin boards• Web ads, e.g. banners
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Finding Electronic Medical Lists
• Example: finding a listserv to recruit patients with Lupus
• Goggle search terms: Lupus listserv
Lupus bulletin board
Lupus support group
http://www.google.com/
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Question: How effective are internet strategies in recruiting participants in comparison to other types of recruitment strategies?
Answer: uncertain, but limited published data (and personal experience) suggest web-based recruitment is
- less effective for in-person trials
- more effective for surveys
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
• Three recruitment strategies:– Web-based, on-line sampling (WHBS-IVBS): 8 weeks of
sampling– Web-based direct marketing, e.g banners (WHBS-DM): 8 weeks
of ads– Venue-based time-location sampling (NHBS): 54 weeks of
sampling
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
*Short, text-only ads on websites, inc clinicaltrials.gov, www.aboutibs.org, and craigslist.com.
Question: Do participants recruited through the internet differ from: - the general population? - participants recruited through other strategies?
Answer: Yes, but that is true of recruitment strategies in general
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
• Compared to general population, internet-recruited participants tended to be:– Younger– More educated– More motivated to quit– Smoked more
• Compared to other trial participants, internet-recruited participants tended to have:– More negative attitudes to smoking– Higher self-efficacy scores– Greater addition to tobacco
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
• Participants Recruited via the Web Tended to be:– Younger– Worse disease (incontinence)
Question: Can the internet increase the enrollment of underrepresented minorities in clinical trials?
Answer: maybe, but evidence to date suggests the opposite (fewer minorities from internet-based recruitment)
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Web-IVBS Web-DM In-Person Venue
Latino 0 14% 19%
African-American 4% 2% 7%
Age 50+ 26% 6% 11%
Income < $30k 6% 28% 32%
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Other Issues• Technical and costs aspects of developing,
managing and updating study-specific website• Limited personnel at Hopkins• Accuracy of self-reported data, including
potential for fabrication• Newer technologies, e.g. twitter• Use of incentives to promote internet-based
enrollment
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009
Summary
• Internet-based recruitment appears promising, but evidence is limited that such approaches:– increase efficiency– reduce costs
especially for traditional, in-person trials
The Office of Recruitment and Retention Lunch Lecture SeriesSeptember 17, 2009