A model for incorporating patient and stakeholder voices in a learning health care network

Washington State's comparative effectiveness research translation network

Emily Beth Devine, Rafael Alfonso-Cristancho, Allison Devlin, Todd C. Edwards, Ellen T. Farrokhi, Larry Kessler, Danielle C. Lavallee, Donald L. Patrick, Sean D. Sullivan, Peter Tarczy-Hornoch, Norbert Yanez, David R. Flum

Research output: Contribution to journalArticle

30 Citations (Scopus)

Abstract

Objective: To describe the inaugural comparative effectiveness research (CER) cohort study of Washington State's Comparative Effectiveness Research Translation Network (CERTAIN), which compares invasive with noninvasive treatments for peripheral artery disease, and to focus on the patient centeredness of this cohort study by describing it within the context of a newly published conceptual framework for patient-centered outcomes research (PCOR). Study Design and Setting: The peripheral artery disease study was selected because of clinician-identified uncertainty in treatment selection and differences in desired outcomes between patients and clinicians. Patient centeredness is achieved through the "Patient Voices Project," a CERTAIN initiative through which patient-reported outcome (PRO) instruments are administered for research and clinical purposes, and a study-specific patient advisory group where patients are meaningfully engaged throughout the life cycle of the study. A clinician-led research advisory panel follows in parallel. Results: Primary outcomes are PRO instruments that measure function, health-related quality of life, and symptoms, the latter developed with input from the patients. Input from the patient advisory group led to revised retention procedures, which now focus on short-term (3-6 months) follow-up. The research advisory panel is piloting a point-of-care, patient assessment checklist, thereby returning study results to practice. The cohort study is aligned with the tenets of one of the new conceptual frameworks for conducting PCOR. Conclusion: The CERTAIN's inaugural cohort study may serve as a useful model for conducting PCOR and creating a learning health care network.

Original languageEnglish (US)
JournalJournal of Clinical Epidemiology
Volume66
Issue number8 SUPPL.8
DOIs
StatePublished - Aug 2013
Externally publishedYes

Fingerprint

Comparative Effectiveness Research
Learning
Delivery of Health Care
Patient Outcome Assessment
Cohort Studies
Peripheral Arterial Disease
Point-of-Care Systems
Research
Life Cycle Stages
Checklist
Uncertainty
Quality of Life

Keywords

  • Comparative effectiveness research
  • Patient-centered outcomes research
  • Patient-reported outcomes
  • Peripheral artery disease
  • Research infrastructure
  • Stakeholders

ASJC Scopus subject areas

  • Epidemiology

Cite this

A model for incorporating patient and stakeholder voices in a learning health care network : Washington State's comparative effectiveness research translation network. / Devine, Emily Beth; Alfonso-Cristancho, Rafael; Devlin, Allison; Edwards, Todd C.; Farrokhi, Ellen T.; Kessler, Larry; Lavallee, Danielle C.; Patrick, Donald L.; Sullivan, Sean D.; Tarczy-Hornoch, Peter; Yanez, Norbert; Flum, David R.

In: Journal of Clinical Epidemiology, Vol. 66, No. 8 SUPPL.8, 08.2013.

Research output: Contribution to journalArticle

Devine, EB, Alfonso-Cristancho, R, Devlin, A, Edwards, TC, Farrokhi, ET, Kessler, L, Lavallee, DC, Patrick, DL, Sullivan, SD, Tarczy-Hornoch, P, Yanez, N & Flum, DR 2013, 'A model for incorporating patient and stakeholder voices in a learning health care network: Washington State's comparative effectiveness research translation network', Journal of Clinical Epidemiology, vol. 66, no. 8 SUPPL.8. https://doi.org/10.1016/j.jclinepi.2013.04.007
Devine, Emily Beth ; Alfonso-Cristancho, Rafael ; Devlin, Allison ; Edwards, Todd C. ; Farrokhi, Ellen T. ; Kessler, Larry ; Lavallee, Danielle C. ; Patrick, Donald L. ; Sullivan, Sean D. ; Tarczy-Hornoch, Peter ; Yanez, Norbert ; Flum, David R. / A model for incorporating patient and stakeholder voices in a learning health care network : Washington State's comparative effectiveness research translation network. In: Journal of Clinical Epidemiology. 2013 ; Vol. 66, No. 8 SUPPL.8.
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