a less focused approach to increasing the pool of research participants: all volunteers all the time

A Less Focused Approach to Increasing the Pool of Research Participants: All Volunteers All the Time

February 9, 2012Nariman A. Nasser, Director

AGENDAStrategies for Increasing the Pool of Potential

Research Volunteers

Pilot usage and recruitment results

Volunteer Research Participant RegistryPolicy issuesRegulationsTechnology and adoption

STRATEGYINCREASING THE POOL

Typical Strategies

• Recruit from clinic patients – prescreen records

• Recruit from clinic patients – brochures

• Advertising – to specific study demographic

Looking for a Needle in a Haystack

INCREASE

New Strategies

• Solidifying referral networks

• Recruitment protocols

• Volunteer registries/databases

Finding a Shovel in a Haystack

Breaking it Down for Parts

USAGEPILOT DATA

San Francisco General HospitalRecruitment Pilot

• Investigators want to extend their reach

• 1 year pilot program for 10 studies– 24/7 staffed phone line– Weekly craigslist posting– Outgoing calls to follow-up as needed

• Outcomes– 692 volunteers (validated unique)– 25% contacted for screening visits– BMI was most beneficial data field for search criteria

Airway Clinical Research CenterAsthma Recruitment Database

• Local disease-specific database

• Used as recruitment protocol/registry

– Characterize asthma severity

– Recruit for current studies real-time

– Register for contact regarding future studies – already prequalified

UCSF Airway Clinical Research Center (ACRC)

Recruitment Trends by County

San Francisco 52%

Alameda 16%

San Mateo 11%

Contra Costa 7%

Santa Clara 4%

Marin 3%

Sonoma 2%

Solano 1%

UCSF Airway Clinical Research Center (ACRC)

Age by Method of Contact

UCSF Airway Clinical Research Center (ACRC)

VOLUNTEER REGISTRYCHALLENGES AND ADOPTION

Technical Challenges

• Must customize software to match workflow

• Need in-house support with technical & clinical research experience

• Steep learning curves– Programmers don’t know research workflow– Recruitment staff don’t know marketing mgmt– Variable technical expertise of general public

Regulatory Challenges

• Waiver of consent

• HIPAA/HITECH compliance

• Minors

• Behavioral health

• Matching to studies through screening/enrollment logs

Available Technologies

• Customer Relationship Management (CRM)

• Survey software

• OpenSource solutions

• Customized trial-tracking software

NEXT STEPS

Populating the Volunteer Registry

• Direct mail to targeted mailing lists

• Craigslist ads

• Facebook page

• Advertorials

• Special health/disease-related events

• Future study participants