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Avoiding Health Disparities When Collecting Patient Data

Determining barriers and facilitators to collecting electronic patient-reported data

Full Project Name:Avoiding Health Disparities When Collecting Patient Data for Clinical Care & Pragmatic ResearchPrincipal Investigator:Bradley H. Crotty, MD, PhD, FACP, MedicineCo-Investigator:Onur Asan, PhD, Medicine; Joni Williams, MD, MPH, Medicine; Rebekah Walker, PhD, Medicine; Joan Neuner, MD, MPH, MedicineAward Amount:$200,000.00
Award Date
January2018
Project Duration:24 months

Project Description Narrative:


Providing care that is respectful of and responsive to individual patient preferences, needs, and values is a key pillar of the National Academy of Medicine's vision of the 21st-century health care system. Patient-centered care encompasses shared medical decision-making based on values, improved trust and connectedness to clinicians, access to appropriate care, and assistance with follow-through in meeting health goals. As care transforms from episodic office-based visits toward more continuous management, with larger multidisciplinary teams, it is critical that care teams have access to data about patients' perspectives, values, and other contextual considerations to tailor conversations and clinical decisions.

Given the promise that improving patient-centered care offers for decreasing disparities, more information is needed to understand perspectives and perceptions of new systems of care. The goal of this project is to determine the barriers and facilitators to collecting electronic patient-reported data (PatientWisdom) and whether adoption and results of use differ by race.

Outcomes & Lessons Learned:


  • Developed patient focus groups and phone calls to collect and identify facilitators and barriers to collecting patient-reported data for use at point-of-care. Shared results with partners at PatientWisdom, Inception Health, and Froedtert & the Medical College of Wisconsin Primary Care clinics, and published in peer-reviewed journals
  • Documented some enhanced aspects of patient-provider communication when patient-centered data is included at the at point-of-care, but found it had little effect on patient activation or the patient's individual knowledge, skill, and confidence to manage their health and health care. No differences were seen by race when analyzed by care
  • Submitted four grant applications to advance work further, one of which was awarded
  • Submitted five manuscripts for publication, two which have been published and three that are under review. A sixth manuscript is planned to report clinical trial results
  • Presented findings at local, regional, and national conferences and meetings via four oral presentations and 10 poster presentations

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