Transcript Trends and Prevalence of Hypertension - ICTR

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
Disclosures and conflict of interest: None
Alternative Topics
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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 Series
September 17, 2009
Is Appel Qualified to
Give this Talk? (Maybe)
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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 Series
September 17, 2009
Outline
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Context
Types of internet-based strategies
A tour of websites
Where’s the beef (data)?
The Office of Recruitment and Retention Lunch Lecture Series
September 17, 2009
Context
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Use of web is commonplace and
increasing, overall and in key, often high
risk subgroups
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Web is replacing paper
– Postal mail
– Newspapers
The Office of Recruitment and Retention Lunch Lecture Series
September 17, 2009
Context
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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 Series
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Use of the Internet in
Studies
Use of Internet to:
Examples
Recruit
Simple survey or typical
in-person trial
(e.g. Cancer Rx)
√
Recruit Plus In-person trial with some
Collect
q’naire data
Data
over web
√
Recruit Plus
Provide
Therapy
Trial with at least 1 webbased therapy
(e.g. wt loss)
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Completely
Web
Trials of HIV prevention,
Smoking cessation
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Just Recruit
Provide
Therapy
Collect
Data
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Enrollment Process for
In-Person Trials: Traditional vs
Web-enhanced Approaches
Traditional
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 website
2nd - By phone
3rd: complete
screening
In person
In person
4th: randomize
In person
In person
Step
Two Types of Individuals
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Unengaged person (unaware of your study)
– Goal: make person aware of and potentially
interested in your study
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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 Series
September 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 Series
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POWER Trial: Mailed Brochure,
then Registration Website
The Office of Recruitment and Retention Lunch Lecture Series
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www.powerhopkins.org/registration
For-Profit Search Engine
Clinical Connection Website
http://www.clinicalconnection.com
The Office of Recruitment and Retention Lunch Lecture Series
September 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 Series
September 17, 2009
Non-Profit Search Engine
Clinical Trials Registration Site
http://clinicaltrials.gov/
The Office of Recruitment and Retention Lunch Lecture Series
September 17, 2009
Search for Trials at Hopkins
Home Page of Hopkins Medicine
http://www.hopkinsmedicine.org/
The Office of Recruitment and Retention Lunch Lecture Series
September 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 Series
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Internet Strategies to Make Initial
Contact with the ‘Unengaged’
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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
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Bulletin boards
Web ads, e.g. banners
The Office of Recruitment and Retention Lunch Lecture Series
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Finding Electronic
Medical Lists
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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 Series
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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 Series
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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 Series
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The Office of Recruitment and Retention Lunch Lecture Series
September 17, 2009
The Office of Recruitment and Retention Lunch Lecture Series
September 17, 2009
The Office of Recruitment and Retention Lunch Lecture Series
September 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 Series
September 17, 2009
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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 Series
September 17, 2009
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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 Series
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Web-IVBS
Web-DM
In-Person Venue
0
14%
19%
African-American
4%
2%
7%
Age 50+
26%
6%
11%
Income < $30k
6%
28%
32%
Latino
The Office of Recruitment and Retention Lunch Lecture Series
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Other Issues
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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 internetbased enrollment
The Office of Recruitment and Retention Lunch Lecture Series
September 17, 2009
Summary
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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 Series
September 17, 2009