May 29, 2020: Advances at the Intersection of Digital Health, Electronic Health Records, and Pragmatic Clinical Trials: Experiences from the Collaboratory PCTs (Wendy Weber, ND, PhD, MPH; Jerry Jarvik, MD, MPH; Lynn DeBar, PhD, MPH; Doug Zatzick, MD; Vince Mor, PhD)

Posted on by Gina Uhlenbrauck

Speakers

Guest Moderator
Wendy Weber, ND, PhD, MPH
Branch Chief, Clinical Research in Complementary and Integrative Health
Division of Extramural Research
National Center for Complementary and Integrative Health, NIH

Panel
Jeffrey (Jerry) G. Jarvik, MD, MPH
LIRE NIH Collaboratory Trials
Professor of Radiology, Neurological Surgery and Health Services
Adjunct Professor of Pharmacy and Orthopedics & Sports Medicine
Co-Director, Comparative Effectiveness, Cost and Outcomes Research Center
Director, UW CLEAR Center for Musculoskeletal Disorders
University of Washington School of Medicine

Lynn DeBar, PhD, MPH
PPACT NIH Collaboratory Trials
Senior Scientist
Kaiser Permanente Washington Health Research Institute

Doug Zatzick, MD
TSOS NIH Collaboratory Trial
Professor, Department of Psychiatry and Behavioral Sciences
University of Washington School of Medicine

Vince Mor, PhD
PROVEN NIH Collaboratory Trial
Florence Pirce Grant University Professor and Professor of Health Services, Policy and Practice
Brown University School of Public Health

Topic

Advances at the Intersection of Digital Health, Electronic Health Records, and Pragmatic Clinical Trials: Experiences from the Collaboratory PCTs

Keywords

EHRs; PCTs; Embedded PCTs; NIH Collaboratory; NIH Collaboratory Trial; PROVEN; LIRE; PPACT; TSOS; Patient-reported outcomes; PROs; Data collection

Key Points

  • Lessons and experiences from the NIH Collaboratory Trials include:
    • Pilot the intervention at the partnering health systems and work closely with site programmers who know the systems best.
    • Monitor the trial’s implementation at regular intervals to detect breakage.
    • Keep both the intervention and the outcomes as simple as possible.
    • Choose endpoints that matter to patients and providers and that are captured reliably as part of routine clinical care.
  • Enabling rapid outcome ascertainment in large pragmatic trials can be a game changer.
  • The Emergency Department Information Exchange (EDIE) in Washington state is an innovative technology platform that can help with the collection of population-level administrative data for acute care follow-up and ongoing care plans.
  • It might be better to uncouple some types of patient-reported outcome (PRO) data collection from the routine clinical care visit.

Discussion Themes

A common theme throughout all the NIH Collaboratory Trial PCTs is how dynamic and ever-changing health care delivery settings are. The reality is that the trial as planned is often not the trial as piloted or conducted.

What type of education is most effective about how to use a PRO to inform care plans and decision-making?

There is nothing like a crisis (eg, the coronavirus pandemic) for people to do things that were before thought impossible. Now, the concept of a “visit” is changing, and there will likely be more uncoupling.

Read more about all 19 of the NIH Collaboratory Trials.

Tags

#pctGR, @Collaboratory1