tracking and retaining study participants lisette johnson-hill senior research associate department...

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


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


Useful Data for Tracking

• Full name, including middle name• Date of birth• Social security number• Mother’s maiden name• Race• Place of birth• Nicknames


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


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


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


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


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


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.


Any questions regarding tracking before we move to retention?


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


SHARE Study Visit Components

• Behavioral interview• Physical examination• Blood draw• Neuropsychological assessment• Various voluntary substudies

Each visit takes approximately 3 hours to complete.


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


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


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.


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


Thank you!

Any questions?

[email protected]

These slides will be made available on our website:

http://ictr.johnshopkins.edu/ORR


mailto:[email protected]

tracking and retaining study participants lisette johnson-hill senior research associate department...

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