Methods and impact of engagement in research, from theory to practice and back again: early findings from the Patient-Centered Outcomes Research Institute

Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation
Laura ForsytheLori Frank

Abstract

Since 2012, PCORI has been funding patient-centered comparative effectiveness research with a requirement for engaging patients and other stakeholders in the research, a requirement that is unique among the US funders of clinical research. This paper presents PCORI's evaluation framework for assessing the short- and long-term impacts of engagement; describes engagement in PCORI projects (types of stakeholders engaged, when in the research process they are engaged and how they are engaged, contributions of their engagement); and identifies the effects of engagement on study design, processes, and outcomes selection, as reported by both PCORI-funded investigators and patient and other stakeholder research partners. Detailed quantitative and qualitative information collected annually from investigators and their partners was analyzed via descriptive statistics and cross-sectional qualitative content and thematic analysis, and compared against the outcomes expected from the evaluation framework and its underlying conceptual model. The data support the role of engaged research partners in refinements to the research questions, selection of interventions to compare, choice of study outcomes and how they are measured, contributions to...Continue Reading

References

Aug 30, 2001·Research in Nursing & Health·M Sandelowski
Jul 20, 2012·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Jo BrettRashida Suleman
Jan 5, 2013·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Bryce B ReeveZeeshan Butt
Mar 14, 2013·Nursing & Health Sciences·Mojtaba VaismoradiTerese Bondas
Jun 5, 2013·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Nathan D ShippeeM Hassan Murad
Feb 27, 2014·BMC Health Services Research·Juan Pablo DomecqMohammad Hassan Murad
Mar 13, 2014·JAMA : the Journal of the American Medical Association·Benjamin KasendaMatthias Briel
Jun 5, 2014·Journal of General Internal Medicine·Thomas W ConcannonJoseph Lau
Jul 23, 2014·Journal of General Internal Medicine·Laura P ForsytheDavid H Hickam
Jan 7, 2015·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Lori FrankSarah Daugherty
Jan 8, 2015·Journal of Comparative Effectiveness Research·Laura P ForsytheAnne Beal
Jul 15, 2015·Journal of General Internal Medicine·Laura P ForsytheLori Frank
Nov 5, 2016·Journal of Comparative Effectiveness Research·Eugene C Rich

❮ Previous
Next ❯

Citations

Jun 2, 2018·Journal of Comparative Effectiveness Research·Nicole A BrysNasia Safdar
Aug 1, 2018·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Antoine BoivinJulia Abelson
Sep 1, 2018·Annals of the American Thoracic Society·Laura C FeemsterUNKNOWN American Thoracic Society Behavioral Sciences and Health Services Research Assembly and Nursing Assembly
Sep 4, 2018·Infection Control and Hospital Epidemiology : the Official Journal of the Society of Hospital Epidemiologists of America·Julie A KeatingNasia Safdar
May 3, 2019·Pharmacoepidemiology and Drug Safety·Wendy Camelo CastilloSuzanne L West
Aug 21, 2019·Pharmacy : Journal of Pharmacy, Education and Practice·Joni C CarrollKim C Coley
Sep 7, 2019·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Lidewij Eva VatJacqueline E W Broerse
Feb 15, 2019·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·James D HarrisonRachel Weiss
Nov 19, 2019·Journal of Comparative Effectiveness Research·Jenny MartinezNatalie E Leland
Sep 7, 2019·The Journal of Nursing Administration·James D HarrisonAndrew D Auerbach
Dec 5, 2019·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Rachel HemphillLaura Esmail
Jul 17, 2020·Journal of Comparative Effectiveness Research·Alycia I BayneKelly J Devers
Aug 9, 2019·Reviews on Recent Clinical Trials·Payal BhardwajRaj Kumar Yadav
Nov 28, 2017·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Steven I BlumCarolyn E Schwartz
Jun 17, 2020·International Wound Journal·Rachel MuirWendy Pearl Chaboyer
Dec 4, 2019·PharmacoEconomics·T Joseph MattinglyC Daniel Mullins
Jul 17, 2020·Research Involvement and Engagement·Lidewij Eva VatHolly Etchegary
Jul 24, 2020·Research Involvement and Engagement·Pernille Christiansen SkovlundKirsten Lomborg
Mar 12, 2020·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Marissa BirdSandra L Carroll
Oct 13, 2020·Research Involvement and Engagement·Andrea HeckertJulie Kennedy Lesch
Oct 23, 2020·Arthritis Care & Research·Esi M Morgan, Adam C Carle
Nov 11, 2020·Psychiatric Services : a Journal of the American Psychiatric Association·Jeanne M MaddenJames F Wharam
Nov 20, 2019·Cancer Epidemiology, Biomarkers & Prevention : a Publication of the American Association for Cancer Research, Cosponsored by the American Society of Preventive Oncology·Margaret M LubasRohit P Ojha
Aug 27, 2019·Journal of Renal Nutrition : the Official Journal of the Council on Renal Nutrition of the National Kidney Foundation·Laura D Byham-GrayPamela Rothpletz-Puglia
Jan 20, 2021·BMJ : British Medical Journal·Luke WolfendenSze Lin Yoong
Jan 27, 2021·Current Oncology·J NeedhamD Nomikos
Feb 16, 2021·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Natasha Y SheikhanJoanna Henderson
Feb 26, 2021·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Lidewij Eva VatTjerk Jan Schuitmaker-Warnaar
Mar 18, 2021·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Clayon B HamiltonLinda C Li
Mar 30, 2021·Western Journal of Nursing Research·Carol Reynolds GearyPaul A Estabrooks
Apr 24, 2021·Nursing Research·Sheila Judge Santacroce, Shawn M Kneipp

❮ Previous
Next ❯

Software Mentioned

WE
ENACT
Ways of Engaging - Engagement Activity Tool ( WE - ENACT )

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.

Related Papers

Annals of Family Medicine
Susan SheridanAdvisory Panel on Patient Engagement (2013 inaugural panel)
Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation
Lori FrankSarah Daugherty
Journal of Comparative Effectiveness Research
Christopher C GayerGillian D Sanders
© 2022 Meta ULC. All rights reserved