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Multicenter Study
. 2013 Aug;66(8 Suppl):S122-9.
doi: 10.1016/j.jclinepi.2013.04.007.

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  1 , 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, N David Yanez, David R Flum; CERTAIN Collaborative
Collaborators, Affiliations
Multicenter Study

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 et al. J Clin Epidemiol. 2013 Aug.

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.

Keywords: Comparative effectiveness research; Patient-centered outcomes research; Patient-reported outcomes; Peripheral artery disease; Research infrastructure; Stakeholders.

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Conflict of interest statement

Financial Disclosure Declaration

EB Devine: AHRQ 1 R01 HS 20025-01; No conflicts of interest

R Alfonso-Cristancho: AHRQ 1 R01 HS 20025-01; No conflicts of interest

A Devlin: AHRQ 1 R01 HS 20025-01; No conflicts of interest

TC Edwards: AHRQ 1 R01 HS 20025-01; No conflicts of interest

ET Farrokhi: No conflicts of interest

L Kessler: AHRQ 1 R01 HS 20025-01; No conflicts of interest

D Lavallee: No conflicts of interest

DL Patrick: AHRQ 1 R01 HS 20025-01; No conflicts of interest

SD Sullivan: AHRQ 1 R01 HS 20025-01; No conflicts of interest

P Tarczy-Hornoch: AHRQ 1 R01 HS 20025-01; NIH NCRR UL1TR000423; No conflicts of interest

ND Yanez ND: AHRQ 1 R01 HS 20025-01; No conflicts of interest

DR Flum: AHRQ 1 R01 HS 20025-01; No conflicts of interest

The Surgical Care and Outcomes Assessment Program (SCOAP) is a Coordinated Quality Improvement Program of the Foundation for Health Care Quality. CERTAIN is a program of the University of Washington, the academic research and development partner of SCOAP. Personnel contributing to this study: Centers for Comparative and Health Systems Effectiveness (CHASE Alliance), University of Washington, Seattle, WA: David R. Flum, MD, MPH; Rafael Alfonso-Cristancho, MD, MSc, PhD; Alexander Clowes, MD; E. Beth Devine, PharmD, MBA, PhD; Todd Edwards, PhD, MA; Farhood Farjah, MD, MPH; Larry Kessler, ScD; Danielle Lavallee, PharmD, PhD; Mark Meissner, MD; Donald Patrick, PhD, MSPH; Sean D. Sullivan, PhD; Peter Tarczy-Hornoch, MD; Erik Van Eaton, MD; N. David Yanez III, PhD; Meliha Yetisgen-Yildiz, PhD, MSc; Allison Devlin, MS; Cheryl Armstrong, BSN, MPH; Mitchell Berman; Robin Boland; Daniel Capurro, MD; Rosemary Grant, BSN, CCRC, CPHQ; Marisha Hativa, MSHS; Marya Johansen; Sondra Johnson; Wendy Klamp, MPA; Sarah Lawrence, MA; Angela Lloyd, MS; Erin Machinchick; Stephanie Mallahan; Kate Nickel, MPH; Rahma Osman; Catherine Pagoaga; Ketki Patel; Robert Salazar; Rebecca Gaston Symons, MPH; Michael Tepper; Tomio Tran; Christina Yantsides; Megan Zadworny, MHA. Providence Everett Regional Medical Center, Everett, WA: Ellen Farrokhi, MD.

Figures

Figure 1
Figure 1. Mullins’ 10-Step Process for Enhancing CER through Continuous Patient Engagement18
CER = Comparative Effectiveness Research; CERTAIN = Comparative Effectiveness Research Translation Network; PCOR = Patient-Centered Outcomes Research; PRO = Patient Reported Outcome
Figure 1
Figure 1. Mullins’ 10-Step Process for Enhancing CER through Continuous Patient Engagement18
CER = Comparative Effectiveness Research; CERTAIN = Comparative Effectiveness Research Translation Network; PCOR = Patient-Centered Outcomes Research; PRO = Patient Reported Outcome
Figure 2
Figure 2. CERTAIN Peripheral Artery Disease (Claudication) Study Endpoint Model
EQ-5D = Euro-QoL-5D; SES = Socio-economic status
See this image and copyright information in PMC

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