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
• June 19, 2009

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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
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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
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Number and Proportion of Men in the MACS Cohort
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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
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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
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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
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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
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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
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Missing Participant Flyer
The Office of Recruitment and Retention Lunch
Lecture Series June 19, 2009
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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
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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
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• Any questions regarding tracking before we move
  to retention?

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