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

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

4. Number and Proportion of Men in the MACS Cohort

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

6. Useful Data for Tracking Full name, including middle name Date of birth Social security number Mother�s maiden name Race Place of birth Nicknames

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

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

10. Missing Participant Flyer

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.

14. Any questions regarding tracking before we move to retention?

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

16. SHARE Study Visit Components Behavioral interview Physical examination Blood draw Neuropsychological assessment Various voluntary substudies Each visit takes approximately 3 hours to complete.

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

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

20. 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)

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. . .

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 participant�s home.

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

24. Thank you! Any questions? ljohnson@jhsph.edu These slides will be made available on our website: http://ictr.johnshopkins.edu/ORR