Office of Clinical Research Informatics

Transcription

1 Office of Clinical Research Informatics With Mary Samuels, Rachel Navarro, Adriel Gorsuch, James Dursch Tim Burdick MD MSc Chief Clinical Research Informatics Officer, OHSU Department of Medical Informatics and Clinical Epidemiology Department of Family Medicine Oregon Clinical Translational Science Institute NCATS UL1TR000128

2 OHSU Epic is a petri dish Epic Ambulatory 2005; Epic In Patient million unique patient records, multiple encounters each 100,000 new patient records per year Much of the data is stored in discrete values using standards (ICD-9/10, SNOMED, RxNORM, LOINC, etc) MyChart: tethered patient portal

3 OHSU Epic is a petri dish brimming with MyChart users 186,000 actived MyChart accounts 2,500 new actived accounts per month In 2015, 67% of patients with an account logged in 42,000 unique users log in each month Average user logs in 5 times per month OHSU MyChart users are disproportionately: women (61%) white (88%) older (mean 44 yrs vs 40 yrs for non-users) (1/1/2016 data)

4 OHSU Clinical Research Informatics Strategic Initiatives to Improve: 1. Informatics for accrual to clinical trials; 2. OHSU Epic for clinical research; 3. Utility of Research Data Warehouse; and 4. Value of Clinical Trials Management System

5 Computable phenotype + Portal = Bat Signal Actions to take in msg: phone # to call study team Epic In Basket message Link to website REDCAp survey MyChart questionnaire

6 Recruitment Method Enrollment Rate % Final Enrollees Ave Age (years) Cost per Enrollee Mailing 497/20984 = 2.4% Phone call 60/4563 = 1.3% Epic alert 13/4091 = 0.3% 38% 59 $30 5% 61 $31 1% 55 $45 MyChart message 639/8864 = 7.2% 49% 61 $4 Parrotta CD and Cordes J. Engaging Patients In Research: Fairview Medical Group Presentation at EPIC Research Advisory Council, Verona, WI, March 2015

7 MyChart for recruitment to clinical trials at OHSU Is it permissible? OHSU policies? Politics? Priority project at OHSU? Are Fairview results reproducible at OHSU? Yield? Cost? Is it ethical? IRB? Patient attitudes? Downgrading of portal as clinical tool?

8 Opt Out from MyChart research messages MyChart message has Opt Out of further MyChart recruitment opportunities

9 MyChart for recruitment in pilot studies Study PI Study type # MyChart msgs sent # (%) MyChart msgs opened # (%) people responding to msg # (%) subjects enrolled Cost ($/enrolle d subject) McCarty (Public Health) Survey of adults; simple criteria (54%) 81 (33%) 79 (32%) $3 Karstens (Women s Health) Overactive bladder trial; complex criteria (57%) 10 (19%) 0 (0%) Zero patients clicked to Opt Out from future contact via MyChart for research. We can increase the number of messages sent with NO additional cost. Works well with simple inclusion/exclusion criteria. [Total cost $250]

10 OHSU MyChart for Recruitment pilot Dennis McCarty (PI) Public Health; 1 clinic, 2 MDs Dept Medicine Pareto Chart of Age Group %Read Percent 1 20 Age Group yrs yrs yrs yrs yrs yrs yrs yrs 0 %Read Percent Cum % % of patients years old read their MyChart message about research

11 MyChart for complex recruitment criteria using Clarity SQL query (PI: Mary Samuels) MD) Recruitment to research volunteer registry First known randomized head to head trial of recruitment patient portal vs mail and phone calls (4:2:1 design) Channel # people in arm # (%) people contacted # (%) subjects enrolled $ per subject enrolled MyChart (53%) Phone (28%) 23 (4.8%) 6 (5.5%) Mail 237? 8 (3.4%) $21 $55 $64

12 Patient perspectives. Opt Out Link from recruitment message: 734 research messages sent, 5 patients Opt Out Link placed in MyChart Log-in banner: 42,365 unique users logged on, 6 Opt Out Survey of patients 414 satisfaction surveys sent, 27 (6.5%) completed

13 Patient perspectives. Surveys to 568 patients w MyChart accounts: Is MyChart acceptable for research? How often are MyChart messages acceptable for research Overall 6% response rate Channel of research recruitment Survey response rate MyChart is unacceptable for research I don t use MyChart MyChart 13/317 (4.1%) 0/13 (0%) 1/13 (8%) Phone 11/69 (15.9%) 2/11 (18%) 5/11 (45%) Mail 10/182 (5.5%) 5/10 (50%) 0/10 (0%)

14 Epic for Research Ethics, Politics Is it ethical to go data mining in the EHR for research purposes? What is consent process? Physician who has clinical relationship consents? Physician who enters data or orders test or procedure? Patient consent? Who is allowed to opt-out? How is that managed? Does consent happen at the level of data source or type? What data can be mined? All data? Patient reported data? CLIA-approved only? Research grade data?

15 Discussion