Building Meaningful Patient Engagement in Research

Nathaniel T. Warren, James A. Gaudino, Sonja Likumahuwa-Ackman, Kristin DIckerson, Lynn Robbins, Kathy Norman, John Lind, Sele D'Amato, Perry Foley, Rachel Gold, Vance Bauer, Scott Fields, Deborah Cohen, Khaya D. Clark, Jennifer Devoe

Research output: Contribution to journalArticle

6 Citations (Scopus)

Abstract

Background: Strategies to engage patients to improve and enhance research and clinical care are increasingly being implemented in the United States, yet little is known about best practices for or the impacts of meaningful patient engagement. Objective: We describe and reflect on our patient stakeholder groups, engagement framework, experiences, and lessons learned in engaging patients in research, from generating proposal ideas to disseminating findings. Setting: The ADVANCE (Accelerating Data Value Across a National Community Health Center Network) clinical data research network is the nation's largest clinical dataset on the safety net, with outpatient clinical data from 122 health systems (1109 clinics) in 23 states. Results: Patients stakeholders codeveloped the ADVANCE engagement framework and its implementation in partnership with network leaders. In phase I of ADVANCE, patients were involved with designing studies (input on primary outcome measures and methods) and usability testing (of the patient portal). In phase II, the network is prioritizing research training, dissemination opportunities, an "ambassador" program to pair more experienced patient stakeholders with those less experienced, and evaluation of engagement activities and impacts. Discussion: The ADVANCE framework for patient engagement has successfully involved a diverse group of patients in the design, implementation, and interpretation of comparative effectiveness research. Our experience and framework can be used by other organizations and research networks to support patient engagement activities.

Original languageEnglish (US)
Pages (from-to)S58-S63
JournalMedical Care
Volume56
DOIs
StatePublished - Oct 1 2018

Fingerprint

Patient Participation
Research
Community Networks
Comparative Effectiveness Research
Community Health Centers
Practice Guidelines
Research Design
Outpatients
Outcome Assessment (Health Care)
Organizations
Safety
Health

Keywords

  • consumer engagement
  • patient-centered outcomes research
  • primary health care
  • underserved populations

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

Warren, N. T., Gaudino, J. A., Likumahuwa-Ackman, S., DIckerson, K., Robbins, L., Norman, K., ... Devoe, J. (2018). Building Meaningful Patient Engagement in Research. Medical Care, 56, S58-S63. https://doi.org/10.1097/MLR.0000000000000791

Building Meaningful Patient Engagement in Research. / Warren, Nathaniel T.; Gaudino, James A.; Likumahuwa-Ackman, Sonja; DIckerson, Kristin; Robbins, Lynn; Norman, Kathy; Lind, John; D'Amato, Sele; Foley, Perry; Gold, Rachel; Bauer, Vance; Fields, Scott; Cohen, Deborah; Clark, Khaya D.; Devoe, Jennifer.

In: Medical Care, Vol. 56, 01.10.2018, p. S58-S63.

Research output: Contribution to journalArticle

Warren, NT, Gaudino, JA, Likumahuwa-Ackman, S, DIckerson, K, Robbins, L, Norman, K, Lind, J, D'Amato, S, Foley, P, Gold, R, Bauer, V, Fields, S, Cohen, D, Clark, KD & Devoe, J 2018, 'Building Meaningful Patient Engagement in Research', Medical Care, vol. 56, pp. S58-S63. https://doi.org/10.1097/MLR.0000000000000791
Warren NT, Gaudino JA, Likumahuwa-Ackman S, DIckerson K, Robbins L, Norman K et al. Building Meaningful Patient Engagement in Research. Medical Care. 2018 Oct 1;56:S58-S63. https://doi.org/10.1097/MLR.0000000000000791
Warren, Nathaniel T. ; Gaudino, James A. ; Likumahuwa-Ackman, Sonja ; DIckerson, Kristin ; Robbins, Lynn ; Norman, Kathy ; Lind, John ; D'Amato, Sele ; Foley, Perry ; Gold, Rachel ; Bauer, Vance ; Fields, Scott ; Cohen, Deborah ; Clark, Khaya D. ; Devoe, Jennifer. / Building Meaningful Patient Engagement in Research. In: Medical Care. 2018 ; Vol. 56. pp. S58-S63.
@article{ea1adbd1e1534d91afcc9e1660c256a5,
title = "Building Meaningful Patient Engagement in Research",
abstract = "Background: Strategies to engage patients to improve and enhance research and clinical care are increasingly being implemented in the United States, yet little is known about best practices for or the impacts of meaningful patient engagement. Objective: We describe and reflect on our patient stakeholder groups, engagement framework, experiences, and lessons learned in engaging patients in research, from generating proposal ideas to disseminating findings. Setting: The ADVANCE (Accelerating Data Value Across a National Community Health Center Network) clinical data research network is the nation's largest clinical dataset on the safety net, with outpatient clinical data from 122 health systems (1109 clinics) in 23 states. Results: Patients stakeholders codeveloped the ADVANCE engagement framework and its implementation in partnership with network leaders. In phase I of ADVANCE, patients were involved with designing studies (input on primary outcome measures and methods) and usability testing (of the patient portal). In phase II, the network is prioritizing research training, dissemination opportunities, an {"}ambassador{"} program to pair more experienced patient stakeholders with those less experienced, and evaluation of engagement activities and impacts. Discussion: The ADVANCE framework for patient engagement has successfully involved a diverse group of patients in the design, implementation, and interpretation of comparative effectiveness research. Our experience and framework can be used by other organizations and research networks to support patient engagement activities.",
keywords = "consumer engagement, patient-centered outcomes research, primary health care, underserved populations",
author = "Warren, {Nathaniel T.} and Gaudino, {James A.} and Sonja Likumahuwa-Ackman and Kristin DIckerson and Lynn Robbins and Kathy Norman and John Lind and Sele D'Amato and Perry Foley and Rachel Gold and Vance Bauer and Scott Fields and Deborah Cohen and Clark, {Khaya D.} and Jennifer Devoe",
year = "2018",
month = "10",
day = "1",
doi = "10.1097/MLR.0000000000000791",
language = "English (US)",
volume = "56",
pages = "S58--S63",
journal = "Medical Care",
issn = "0025-7079",
publisher = "Lippincott Williams and Wilkins",

}

TY - JOUR

T1 - Building Meaningful Patient Engagement in Research

AU - Warren, Nathaniel T.

AU - Gaudino, James A.

AU - Likumahuwa-Ackman, Sonja

AU - DIckerson, Kristin

AU - Robbins, Lynn

AU - Norman, Kathy

AU - Lind, John

AU - D'Amato, Sele

AU - Foley, Perry

AU - Gold, Rachel

AU - Bauer, Vance

AU - Fields, Scott

AU - Cohen, Deborah

AU - Clark, Khaya D.

AU - Devoe, Jennifer

PY - 2018/10/1

Y1 - 2018/10/1

N2 - Background: Strategies to engage patients to improve and enhance research and clinical care are increasingly being implemented in the United States, yet little is known about best practices for or the impacts of meaningful patient engagement. Objective: We describe and reflect on our patient stakeholder groups, engagement framework, experiences, and lessons learned in engaging patients in research, from generating proposal ideas to disseminating findings. Setting: The ADVANCE (Accelerating Data Value Across a National Community Health Center Network) clinical data research network is the nation's largest clinical dataset on the safety net, with outpatient clinical data from 122 health systems (1109 clinics) in 23 states. Results: Patients stakeholders codeveloped the ADVANCE engagement framework and its implementation in partnership with network leaders. In phase I of ADVANCE, patients were involved with designing studies (input on primary outcome measures and methods) and usability testing (of the patient portal). In phase II, the network is prioritizing research training, dissemination opportunities, an "ambassador" program to pair more experienced patient stakeholders with those less experienced, and evaluation of engagement activities and impacts. Discussion: The ADVANCE framework for patient engagement has successfully involved a diverse group of patients in the design, implementation, and interpretation of comparative effectiveness research. Our experience and framework can be used by other organizations and research networks to support patient engagement activities.

AB - Background: Strategies to engage patients to improve and enhance research and clinical care are increasingly being implemented in the United States, yet little is known about best practices for or the impacts of meaningful patient engagement. Objective: We describe and reflect on our patient stakeholder groups, engagement framework, experiences, and lessons learned in engaging patients in research, from generating proposal ideas to disseminating findings. Setting: The ADVANCE (Accelerating Data Value Across a National Community Health Center Network) clinical data research network is the nation's largest clinical dataset on the safety net, with outpatient clinical data from 122 health systems (1109 clinics) in 23 states. Results: Patients stakeholders codeveloped the ADVANCE engagement framework and its implementation in partnership with network leaders. In phase I of ADVANCE, patients were involved with designing studies (input on primary outcome measures and methods) and usability testing (of the patient portal). In phase II, the network is prioritizing research training, dissemination opportunities, an "ambassador" program to pair more experienced patient stakeholders with those less experienced, and evaluation of engagement activities and impacts. Discussion: The ADVANCE framework for patient engagement has successfully involved a diverse group of patients in the design, implementation, and interpretation of comparative effectiveness research. Our experience and framework can be used by other organizations and research networks to support patient engagement activities.

KW - consumer engagement

KW - patient-centered outcomes research

KW - primary health care

KW - underserved populations

UR - http://www.scopus.com/inward/record.url?scp=85052833625&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85052833625&partnerID=8YFLogxK

U2 - 10.1097/MLR.0000000000000791

DO - 10.1097/MLR.0000000000000791

M3 - Article

C2 - 30074953

AN - SCOPUS:85052833625

VL - 56

SP - S58-S63

JO - Medical Care

JF - Medical Care

SN - 0025-7079

ER -