lawrence j. appel, md, mph professor of medicine welch center for prevention,

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