Tracking and Retaining Study Participants
Lisette Johnson-HillSenior Research AssociateDepartment of EpidemiologyBloomberg School of Public Health
June 19, 2009
Presentation Overview
• Present and describe elements of a successful recruitment plan / strategy
• Present and review elements of successful, measurable retention strategies
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Study to Help the AIDS Research Effort
• Began in 1984
• Longitudinal prospective study of the natural history of HIV/AIDS among gay and bisexual men
• Multicenter AIDS Cohort Study (MACS)– Baltimore/DC (2003), Chicago, Los Angeles, Pittsburgh
• Extremely motivated cohort – collected numerous specimens
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Number and Proportion of Men in the MACS Cohort
Original Cohort 1984
n = 4,953
New Recruits1987
n = 664
New Recruits2002-2003n = 1,356
White 4,451 (90%) 230 (35%) 384 (28%)
Hispanic 248 ( 5%) 51 (8%) 273 (20%)
Black 188 ( 4%) 376 (57%) 670 (49%)
Native American
20 ( .4%) 3 ( .4%) 2 ( .1%)
Asian/Pacific Islanders
27 ( .5%) 1 ( .1%) 8 (.6%)
Other 19 ( .4%) 3 (.4%) 19 (1.4%)
Total 4,953 664 1,356
How to Find Lost Participants
• Web searches – social security, whitepages.com, peoplefinders.com, intelius.com, people.yahoo.com, people.search.now.com, etc (too many to list)!
• Prison logs
• National Death Index (NDI)
• Community tracker
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Useful Data for Tracking
• Full name, including middle name• Date of birth• Social security number• Mother’s maiden name• Race• Place of birth• Nicknames
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Permission to Contact
Obtain written permission from study participants to contact them and/or their contacts (friends and relatives)
– By mail
– By telephone – home, work, cell
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Assign/update follow-up codes in SFIS
Assign pre follow up codes
Populate Retention database w/Inactive (IN) participants
Initiate telephone calls to participant and contacts.
AM call and send letter-participant
PM call and send letter-participant
Weekend call and mail letter-participant
After exhausting calls and letters to participants and contacts, refer to Tracker
Tracker hand-delivers letters to participant’s home.
If participant is found, the appointment is entered in
the Retention database until the participant comes in
After exhausting all options, participant’s pre-follow-up code
is changed to Trace/Lost (TR/L), and the participant is
added to the next NDI search.
If appointment
is kept, participant ‘s follow-up
status is changed to Active (A),
and SFIS is updated.
Initiate calls and letters to contacts
Tracker posts flyers in the community and/or Moore Clinic
Retention Algorithm
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Community Tracker
• Represents the target community
• Tracker sent to the community after contact options have been exhausted
• Hand delivers letters to participant home
• Posts “Missing Participant” flyers in the surrounding community
• Delivers flyers to the Moore Clinic
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Missing Participant Flyer
We have been looking all over for you!
If you are a member of SHARE,
please call us at (410) 955-7090 or toll-free at 1 (866) 392-8991.
Joseph B. Margolick, MD, PhD Principal Investigator
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
ATTENTION
MOORE CLINIC
Your patient is enrolled in the Study to Help the AIDS Research Effort (SHARE) study.
He is overdue for his SHARE appointment.Please call us at 5-7090 when he comes in.
Thanks!
Joseph B. Margolick, MD, PhDPrincipal Investigator
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Retention Survey
1. What are some of the reasons why you could not complete your visit?
2. How / why did you return to SHARE?
3. What are some of the reasons you decided to return to SHARE?
4. What did you like the most about your SHARE visit?
5. What did you like the least about your SHARE visit?
6. How was your visit today?
7. How likely are you to continue in the study?
8. Please use this space for any other comments.
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Any questions regarding tracking before we move to retention?
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Community Advisory Board
• Regular monthly meetings• Ongoing enrollment of new CAB members • Provide feedback regarding ongoing and new
studies• Offer opinions regarding retention• Review posters, flyers, brochures• Assist in planning events and activities• Participate in community events• Pilot study instruments
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
SHARE Study Visit Components
• Behavioral interview• Physical examination• Blood draw• Neuropsychological assessment• Various voluntary substudies
Each visit takes approximately 3 hours to complete.
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Showing the Love!
• Apply the Golden Rule – treat others the way you want to be treated
• Be sensitive to the needs of study participants• Train staff to be “culturally competent”• Go the extra mile • Always be courteous and polite • Provide good food during study visits. Many
participants fast for at least 8 hours prior to their visit. • Implement systems to measure participant satisfaction
and make adjustments as appropriate
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Participant Incentives
• Free physical examinations and blood work – CBC, HIV, viral load, lipid panel, PSAs, etc.
• Send lab results to participants and/or providers• Thank you cards after each study visit• Newsletters• Informational forums on topics identified by study
participants (CAB). Site alternates between Baltimore and Washington, DC w/free transportation
• Cash reimbursement for study visits• (Good) food during visits• Reimbursement for travel including parking• Holiday cards
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
SHARE Spring ForumJohns Hopkins University – SAIS Center, Rome Auditorium
1619 Massachusetts Avenue, Washington, D.C. 20036
PROGRAMIntroduction and Welcome Joseph B. Margolick, M.D., Ph.D.
Talks
An Update on HIV Treatment Joel Gallant, M.D., M.P.H.The “New HIV” Strain in New York Joseph B. Margolick, M.D., Ph.D.An Overview of Hepatitis B and C Chloe L. Thio, M.D.
Posters
Glucose Intolerance and Diabetes Todd T. Brown, M.D. in SHAREHepatitis in SHARE Stacey Meyerer and Morgan Marks
Serology LabUpdate on Cardiovascular Substudy Robert M. Jarboe, M.S.Demographics of New Recruits Lisette Johnson, M.S.Patient Advocacy and Empowerment Christopher C. Camp, Chair
SHARE CABThe Office of Recruitment and Retention Lunch Lecture Series
June 19, 2009
Minimizing Lost to Follow-Up: RetentionMechanisms
Strategies for maintaining contact – establish bond
– Interim mailings, telephone calls
– Flexible schedule / venue (home, clinic, blood kits
with telephone interview for those who move away)
– Use postal service, directories, passive methods
– Incentives (study trinkets, useful risk/disease-
related information, remuneration, informative
newsletters and forms, test results, referrals)
– Informational forums to disseminate results
– Personal touch (thank you and holiday cards)The Office of Recruitment and Retention Lunch Lecture Series
June 19, 2009
Personal Issues of Participants
• Too busy
• Live too far away
• Working schedule
• Limited reading ability
• Study fatigue
Now, design your study to be responsive to the personal issues of your participants.
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Flexibility
• Saturday Clinics – Held the first Saturday of each month at Whitman-Walker in Washington, DC; third Saturday of each month at JHU.
• GCRC Visits – Special, off-schedule, full visits conducted in the General Clinical Research Center (GCRC).
• GCRC Blood Draw – Blood draws conducted the morning before the study visit. For participants who are not able to fast.
• A.M. Home Blood Draw – For participants not able to come to the GCRC for a morning blood draw.
• Whitman-Walker Clinic Visits – Alternate SHARE site for SHARE participants who live in DC.
• Telephone Interviews – Primarily for out-of-state participants.
• Home Visits – Complete study visits conducted in the participant’s home. The Office of Recruitment and Retention Lunch Lecture Series
June 19, 2009
Participation Satisfaction Survey
We are interested in what you think is the MOST IMPORTANT reason that MOST OTHER SHARE MEN, besides yourself, continue to participate in the study after several years.
• Are the SHARE visit appointment times convenient for you?• Are the interview and exam rooms comfortable?• Were staff members courteous and considerate to you at this visit?• Did you feel comfortable talking to staff or asking questions about your visit and/or
your health?• Were you satisfied with explanations or answers that staff provided to your questions
and concerns?• Overall, did your visit run smoothly (beginning with registration to your exam)?• Please circle the one MAIN REASON you return for SHARE visits: Concern about
my health and body, SHARE staff, free health care, money and reimbursement, to get counseling and referrals, special events and support (forums), to help other men, a commitment to research
Responses are used as part of continuous quality improvement
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009
Thank you!
Any questions?
These slides will be made available on our website:
http://ictr.johnshopkins.edu/ORR
The Office of Recruitment and Retention Lunch Lecture SeriesJune 19, 2009