Giving patients a voice: a participatory evaluation of patient engagement in Newfoundland and Labrador Health Research

Research Involvement and Engagement
Lidewij Eva VatHolly Etchegary

Abstract

Efforts to engage patients as partners in health research have grown and thereby the need for feedback and evaluation. In this pilot evaluation study, we aimed to 1) evaluate patient engagement in health research projects in Newfoundland and Labrador, Canada, and 2) learn more about how to best monitor and evaluate patient engagement. This paper presents the results of our participatory evaluation study and the lessons learned. The evaluation of the projects was driven by questions patients wanted answered. We conducted a formative evaluation of patient engagement in health research projects. Projects spanned a variety of topics, target groups, research designs and methods of patient engagement. Participants included principal investigators (n = 6) and their patient partners (n = 14). Furthermore, graduate students (n = 13) working on their own research projects participated. Participants completed an online survey with closed and open-ended questions about their patient engagement efforts, experiences and preliminary outcomes. Patients were involved as co-investigators in the entire evaluation study. We used qualitative methods to evaluate our participatory process. The evaluation study results show that most patients and rese...Continue Reading

References

Aug 15, 2000·Research in Nursing & Health·M Sandelowski
Mar 1, 2012·Evaluation and Program Planning·Rita G O'Sullivan
Jul 20, 2012·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Jo BrettRashida Suleman
Feb 1, 2013·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Maarten P T de WitTineke A Abma
Feb 27, 2014·BMC Health Services Research·Juan Pablo DomecqMohammad Hassan Murad
Jul 15, 2015·Journal of General Internal Medicine·Laura P ForsytheLori Frank
Jun 25, 2016·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Joanna C CrockerLouise Locock
Mar 13, 2017·BMC Health Services Research·Holly EtchegaryBrendan Barrett
May 14, 2017·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Laura ForsytheLori Frank
Jul 31, 2015·Research Involvement and Engagement·Kristina Staley
Oct 25, 2017·Research Involvement and Engagement·Lidewij Eva VatHolly Etchegary
Feb 9, 2018·Health Research Policy and Systems·Elizabeth ManafoVirginia Vandall-Walker
Apr 15, 2018·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Elspeth MathieJulia Jones
Aug 1, 2018·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Antoine BoivinJulia Abelson
Sep 12, 2018·BMJ : British Medical Journal·Tessa RichardsFiona Godlee
Feb 23, 2019·Research Involvement and Engagement·Tim BellNicolas Fernandez
Sep 7, 2019·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Lidewij Eva VatJacqueline E W Broerse

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Citations

Feb 26, 2021·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Lidewij Eva VatTjerk Jan Schuitmaker-Warnaar
May 1, 2021·Current Oncology·Stéphanie MichaudBarry D Stein
Mar 18, 2021·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Clayon B HamiltonLinda C Li

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Software Mentioned

SPOR
NL
NL SUPPORT
Patient Canada
RAPPORT
SUPPORT
Patient and Public Engagement Evaluation Toolkit
Patient and Public Evaluation Toolkit
GRIPP2
Research with Patients and Public involvement ( RAPPORT )

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