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Tracking and Retaining Study Participants

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Tracking and Retaining Study Participants Lisette Johnson-Hill Senior Research Associate Department of Epidemiology Bloomberg School of Public Health – PowerPoint PPT presentation

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Title: Tracking and Retaining Study Participants


1
Tracking and Retaining Study Participants
  • Lisette Johnson-Hill
  • Senior Research Associate
  • Department of Epidemiology
  • Bloomberg School of Public Health
  • June 19, 2009

2
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 Series June 19, 2009
3
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 Series June 19, 2009
4
Number and Proportion of Men in the MACS Cohort
Original Cohort 1984 n 4,953 New Recruits 1987 n 664 New Recruits 2002-2003 n 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
5
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 Series June 19, 2009
6
Useful Data for Tracking
  • Full name, including middle name
  • Date of birth
  • Social security number
  • Mothers maiden name
  • Race
  • Place of birth
  • Nicknames

The Office of Recruitment and Retention Lunch
Lecture Series June 19, 2009
7
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 Series June 19, 2009
8
Retention Algorithm

Assign/update follow-up codes in SFIS
AM call and send letter-participant
Assign pre follow up codes
PM call and send letter-participant
Populate Retention database w/Inactive (IN)
participants
Weekend call and mail letter-participant
If appointment is kept, participant s follow-up
status is changed to Active (A), and SFIS is
updated.
Initiate telephone calls to participant and
contacts.
Initiate calls and letters to contacts
After exhausting calls and letters to
participants and contacts, refer to Tracker
If participant is found, the appointment is
entered in the Retention database until the
participant comes in
Tracker hand-delivers letters to participants
home.
After exhausting all options, participants
pre-follow-up code is changed to Trace/Lost
(TR/L), and the participant is added to the next
NDI search.
Tracker posts flyers in the community and/or
Moore Clinic
The Office of Recruitment and Retention Lunch
Lecture Series June 19, 2009
9
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 Series June 19, 2009
10
Missing Participant Flyer
The Office of Recruitment and Retention Lunch
Lecture Series June 19, 2009
11
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,
PhD Principal Investigator
The Office of Recruitment and Retention Lunch
Lecture Series June 19, 2009
12
(No Transcript)
13
Retention Survey
  • What are some of the reasons why you could not
    complete your visit?
  • How / why did you return to SHARE?
  • What are some of the reasons you decided to
    return to SHARE?
  • What did you like the most about your SHARE
    visit?
  • What did you like the least about your SHARE
    visit?
  • How was your visit today?
  • How likely are you to continue in the study?
  • Please use this space for any other comments.

The Office of Recruitment and Retention Lunch
Lecture Series June 19, 2009
14
  • Any questions regarding tracking before we move
    to retention?

The Office of Recruitment and Retention Lunch
Lecture Series June 19, 2009
15
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 Series June 19, 2009
16
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 Series June 19, 2009
17
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 Series June 19, 2009
18
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 Series June 19, 2009
19
SHARE Spring Forum Johns Hopkins University
SAIS Center, Rome Auditorium 1619 Massachusetts
Avenue, Washington, D.C. 20036 PROGRAM Introduct
ion 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 SHARE Hepatitis in
SHARE Stacey Meyerer and Morgan Marks
Serology Lab Update 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 CAB
The Office of Recruitment and Retention Lunch
Lecture Series June 19, 2009
20
Minimizing Lost to Follow-Up RetentionMechanism
s
  • 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
21
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 Series June 19, 2009
22
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 participants home.

The Office of Recruitment and Retention Lunch
Lecture Series June 19, 2009
23
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 Series June 19, 2009
24
  • Thank you!
  • Any questions?
  • ljohnson_at_jhsph.edu
  • These slides will be made available on our
    website
  • http//ictr.johnshopkins.edu/ORR

The Office of Recruitment and Retention Lunch
Lecture Series June 19, 2009
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