Implementing REDCap for Syringe Exchange Program SEP Data

Implementing REDCap for Syringe Exchange Program (SEP) Data Collection Lee Hoffer, Ph. D MPE Associate Professor of Medical Anthropology Case Western Reserve University Lee. hoffer@case. edu

For My Presentation 1. Present the challenges of data collection 2. Discuss creating infrastructure for this capacity 3. Present a project (collaboration) to help you with 1 & 2 About me… ü I have done research with active drug users since 1994 (interest in local drug markets & tracking drug use trends) ü Research in Denver, St. Louis, & Taipei, Taiwan ü I came to Cleveland (CWRU) in 2008 ü I have worked with syringe exchange programs since 1995

The Challenges of Collecting Data collection… ü Is expensive (effort) (Involves: collection, validation, data entry, storage, & reporting) ü Requires specialized training & attention to detail ü Requires precision (following protocols / conventions) ü Is time-consuming (for clients too)

The Challenges of Collecting Data collection must be… 1. Standardized 2. 3. 4. 5. Accurate Efficient Useful (i. e. , Informative & accessible) (For organizations) Non-disruptive to operations ü The above, requires capacity, expertise, & infrastructure (Data analysis: extracting the information you need, rapidly)

The Challenges of Collecting Data “ I’ll pause for a moment so you can let this information sink in. ”

The Project • Develop an electronic system to collect client information, monitor services, & syringe exchange activity – Using REDCap • Standardize (basic) data collection • Create a statewide collaboration to monitor trends, compare regions, etc. • Utilize this system to… 1. Inform local service delivery: program decision-making, assist development (grant writing), & monitor program-based operations 2. Monitor client populations: trends in drug use, & other activity over time 3. Provide research infrastructure (statewide): to collect research data on drug using behaviors across SEP sites

Circle Health, Syringe Exchange - Example ü ü Consultation / needs assessment conducted in 2014 Since 1995, paper forms used & entered into Microsoft Access Very cumbersome process (collection, then entry) Difficulties: managing & extracting data Initial project: 1. Field observations to assess data needs 2. Designed REDCap forms (E. g. , demographics, visit, nurse form) 3. Trained staff 4. REDCap system installed (September, 2017) 5. Pilot Testing 6. Technical Assistance for implementation 7. Ongoing support (E. g. , generating reports, auditing data collection) ü March 2018, we installed REDCap system for Portsmouth SEP

What is REDCap? • A secure web-based application for building & managing online data collection (2004, Vanderbilt University) • Currently being used by 3176 institutions in 128 countries (36 institutions in OH – CWRU, OSU, Cleveland Clinic, etc. ) Key Features: ü Cloud & web-based (Can also work “off-line”) ü Powerful survey development tools ü Scalable ü ü Seamless multi-site capabilities Permissions are controlled Easy to export data for analyses / reporting (Excel, SPSS, etc. ) Secure (HIPPA compliant)

Why Use REDCap? • No paper-based data collection (paper gets lost, can be inacurate, must be entered / stored) • Can be used on any web-connected device (computer, tablet, phone) • Time savings for data collection, auditing, processing, etc. • Data entry controls • Data access controls • No data storage costs • You own data • Easy to download full or partial dataset, report generation • Offers real-time data collection • Customization is straightforward Limitations: • You cannot import data you have already collected • It is a research tool, not a database

What Expertise is Needed to Use REDCap? • Basic computer skills (for data entry) • Knowledge of Excel, SPSS, or other data management software How Much does Using REDCap Cost? • • • No costs for use by members (collaborators) in consortium Being a member requires specific technical capacities Non-members, REDCap access does have costs

REDCap Screenshots

Data Entry Flowchart Entering Client’s Data into REDCap New Client Fill Out: 1. Demographic Info 2. New Client Info 3. Exchange Visit Info Returning Client Fill Out: 1. Exchange Visit Info

The Project Cleveland Sept. 2017 Portsmouth Mar. 2018

The Project Cleveland Portsmouth

The Project Cleveland Portsmouth

The Project Cleveland Portsmouth

The Project • Develop an electronic system to collect client information, monitor services, and syringe exchange activity – Using REDCap • Standardize (basic) data collection • Create a statewide collaboration to monitor trends, compare regions, etc. • Utilize this system to… 1. Inform local service delivery: program decision-making, assist development (grant writing), & monitor program-based operations 2. Monitor client populations: trends in drug use, & other activity over time 3. Provide research infrastructure (statewide): to collect research data on drug using behaviors across SEP sites

The Project (pilot study) Modeling drug demand (2017 -2018) • Conducting a survey comparing: drug use behaviors, attitudes, & how users acquire drugs • Surveying N=150 clients (ea. site) • Using data to inform a computer simulation (program) that models local drug demand (tool for service providers / policymakers)

So…

The Project Toledo Cleveland Akron Canton Marion Steubenville Greenville Fairborn Dayton Zanesville Columbus Athens Cincinnati Portsmouth Georgetown Gallipolis

REDCap – What we can do 1. 2. 3. 4. 5. Conduct audit to evaluate & streamline your data collection Setup REDCap accounts / access Provide basic data collection forms Train your staff Help initally implement the system (i. e. , help get your clients into REDCap) 6. Provide ongoing support & data management 7. Generate & deliver monthly reports (CWRU Dept. of Population and Quantitative Health Sciences) 8. Computerize additional forms you may be using (revise questions, etc. ), & add them to your REDCap

REDCap – What we can do Advantages: ü You own your data ü Case Western Reserve University is an outside agency (another set of eyes) ü We can assist in evaluating results ü Research is what we do (but we have specific experience: working with active drug users, harm reduction, & syringe exchange programs)

REDCap – What we can do Our cost to you for… 1. 2. 3. 4. 5. 6. REDCap set-up & access Electronic data collection forms Implementation assistance Ongoing-support Report generation Time & labor (for the above) $3 -4000 (One-time fee: labor & travel)* * Graduate student researchers only

Acknowledgments ü Lisa Fair, Circle Health, Cleveland, OH ü Lisa Roberts, Dept. of Health, Portsmouth, OH CWRU Research Team: ü Kelley Kampman, MA ü Allison Schlosser, Ph. D ü Estee Cramer (MPH student) THANK YOU Questions? (please take handout with project & contact information )