Literature DB >> 24236555

Unresolved tensions in consumer engagement in CER: a US research perspective.

Thomas Workman1, Maureen Maurer, Kristin Carman.   

Abstract

Efforts to engage patients and consumers in comparative effectiveness research (CER) in the USA are still in the early stages, and the outcomes of these partnerships have yet to be fully understood or realized. Our work assisting federal agencies and national organizations who engage patients and consumers in CER reveal three unresolved tensions around the representation of the patient experience in the research process, the culture of research and capacity to partner with patients and consumers, and the conflict between the methodological approaches to CER and the outcomes of interest to patients and caregivers. Several approaches to address these tensions have emerged, yet resolving these tensions will require addressing many system-level challenges and building an evidence base for consumer engagement in CER.

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Year:  2013        PMID: 24236555     DOI: 10.2217/cer.13.6

Source DB:  PubMed          Journal:  J Comp Eff Res        ISSN: 2042-6305            Impact factor:   1.744


  8 in total

1.  Querying stakeholders to inform comparative effectiveness research.

Authors:  Yoon Duk Hong; Daisuke Goto; C Daniel Mullins
Journal:  J Comp Eff Res       Date:  2017-05-09       Impact factor: 1.744

Review 2.  The importance of measuring the impact of patient-oriented research.

Authors:  Diane Aubin; Marilynne Hebert; Dean Eurich
Journal:  CMAJ       Date:  2019-08-06       Impact factor: 8.262

Review 3.  A systematic review of approaches for engaging patients for research on rare diseases.

Authors:  Laura P Forsythe; Victoria Szydlowski; Mohammad Hassan Murad; Stanley Ip; Zhen Wang; Tarig A Elraiyah; Rachael Fleurence; David H Hickam
Journal:  J Gen Intern Med       Date:  2014-08       Impact factor: 5.128

4.  Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute.

Authors:  Lori Frank; Laura Forsythe; Lauren Ellis; Suzanne Schrandt; Sue Sheridan; Jason Gerson; Kristen Konopka; Sarah Daugherty
Journal:  Qual Life Res       Date:  2015-01-06       Impact factor: 4.147

5.  Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned.

Authors:  Laura P Forsythe; Lauren E Ellis; Lauren Edmundson; Raj Sabharwal; Alison Rein; Kristen Konopka; Lori Frank
Journal:  J Gen Intern Med       Date:  2015-07-10       Impact factor: 5.128

6.  Consumer engagement in health care policy, research and services: A systematic review and meta-analysis of methods and effects.

Authors:  Louise K Wiles; Debra Kay; Julie A Luker; Anthea Worley; Jane Austin; Allan Ball; Alan Bevan; Michael Cousins; Sarah Dalton; Ellie Hodges; Lidia Horvat; Ellen Kerrins; Julie Marker; Michele McKinnon; Penelope McMillan; Maria Alejandra Pinero de Plaza; Judy Smith; David Yeung; Susan L Hillier
Journal:  PLoS One       Date:  2022-01-27       Impact factor: 3.240

7.  Making patient centered care a reality: a survey of patient educational programs in Italian Cancer Research and Care Institutes.

Authors:  C Cipolat Mis; I Truccolo; V Ravaioli; S Cocchi; L Gangeri; P Mosconi; C Drace; L Pomicino; A Paradiso; P De Paoli
Journal:  BMC Health Serv Res       Date:  2015-07-30       Impact factor: 2.655

8.  Evaluation of a project to engage patients in the development of a patient-reported measure for HIV care (the I-Score Study).

Authors:  David Lessard; Kim Engler; Isabelle Toupin; Jean-Pierre Routy; Bertrand Lebouché
Journal:  Health Expect       Date:  2018-10-29       Impact factor: 3.377

  8 in total

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