Cited by 502Mental Health and Patient InvolvementHealth Policy Implementation ScienceCommunity Health and Development

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Evaluating patient and stakeholder engagement in research: moving from theory to practice

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Esmail, Laura, Moore, Emily, Rein, Alison·2015·Journal of Comparative Effectiveness Research

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Abstract

Despite the growing demand for research that engages stakeholders, there is limited evidence in the literature to demonstrate its value – or return on investment. This gap indicates a general lack of evaluation of engagement activities. To adequately inform engagement activities, we need to further investigate the dividends of engaged research, and how to evaluate these effects. This paper synthesizes the literature on hypothesized impacts of engagement, shares what has been evaluated and identifies steps needed to reduce the gap between engagement's promises and the underlying evidence supporting its practice. This assessment provides explicit guidance for better alignment of engagement's promised benefits with evaluation efforts and identifies specific areas for development of evaluative measures and better reporting processes.

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Rowe, G., & Frewer, L. J. (2005) · Science Technology & Human Values · doi:10.1177/0162243904271724 · Cited by 1,860
Patient And Family Engagement: A Framework For Understanding The Elements And Developing Interventions And Policies
Carman, K. L., Dardess, P., Maurer, M. E., Sofaer, S., Adams, K., Bechtel, C., & Sweeney, J. (2013) · Health Affairs · doi:10.1377/hlthaff.2012.1133 · Cited by 1,770
Mapping the impact of patient and public involvement on health and social care research: a systematic review
Brett, J., Staniszewska, S., Mockford, C., Herron‐Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014) · Health Expectations · doi:10.1111/j.1369-7625.2012.00795.x · Cited by 1,598
Development of a theory of implementation and integration: Normalization Process Theory
May, C. R., Mair, F., Finch, T., MacFarlane, A., Dowrick, C., Treweek, S., Rapley, T., Ballini, L., Ong, B. N., Rogers, A., et al. (2009) · Implementation Science · doi:10.1186/1748-5908-4-29 · Cited by 1,409
Nothing about us without us: disability oppression and empowerment
Charlton, J. I. (1998) · Choice Reviews Online · doi:10.5860/choice.36-0640 · Cited by 1,124
Stakeholder Engagement: Beyond the Myth of Corporate Responsibility
Greenwood, M. (2007) · Journal of Business Ethics · doi:10.1007/s10551-007-9509-y · Cited by 1,061
Deliberations about deliberative methods: issues in the design and evaluation of public participation processes
Abelson, J., Forest, P., Eyles, J. D., Smith, P., Martin, E., & Gauvin, F. (2003) · Social Science & Medicine · doi:10.1016/s0277-9536(02)00343-x · Cited by 983
Community-based participatory research: assessing the evidence.
Viswanathan, M., Ammerman, A., Eng, E. M., Garlehner, G., Lohr, K. N., Griffith, D. M., Rhodes, S. D., Samuel‐Hodge, C. D., Maty, S. C., Lux, L. J., et al. (2004) · PubMed Central · Cited by 959
Evaluating Public-Participation Exercises: A Research Agenda
Rowe, G., & Frewer, L. J. (2004) · Science Technology & Human Values · doi:10.1177/0162243903259197 · Cited by 882
Patient and service user engagement in research: a systematic review and synthesized framework
Shippee, N. D., Garces, J. P. D., López, G., Wang, Z., Elraiyah, T. A., Nabhan, M., Brito, J. P., Boehmer, K. B., Hasan, R., Firwana, B., et al. (2013) · Health Expectations · doi:10.1111/hex.12090 · Cited by 630

Show all 68 references

Research works printed but not linked: 4

Krumholz H . National priorities and research agenda . In : Patient-Centered Outcomes Research Institute National Patient and Stakeholder Dialogue . Patient-Centered Outcomes Research Institute , Washington, DC, USA ( 2012 ).
Garces JPD , Lopez GJP , Wang Z Eliciting Patient Perspective in Patient-Centered Outcomes Research: a Meta Narrative Systematic Review . Patient-Centered Outcomes Research Institute (PCORI) , Washington, DC, USA , 1 – 163 ( 2012 ).
Mullins CD . Integrating Patients’ Voices in Study Design Elements with a Focus on Hard-to-reach Populations . Patient-Centered Outcomes Research Institute (PCORI) , Washington, DC, USA ( 2012 ).
Nass PL , Levine S , Yancy C . Methods for Involving Patients in Topic Generation for Patient-Centered Comparative Effectiveness Research – an International Perspective . Patient-Centered Outcomes Research Institute (PCORI) , Washington, DC, USA ( 2012 ).

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Yadav, U. N., Lloyd, J. E., Baral, K. P., Bhatta, N., Mehata, S., & Harris, M. (2021) · BMJ Open · doi:10.1136/bmjopen-2020-045175 · Cited by 39
Exploring patient and family involvement in the lifecycle of an orphan drug: a scoping review
Young, A., Menon, D., Street, J., Al‐Hertani, W., & Stafinski, T. (2017) · Orphanet Journal of Rare Diseases · doi:10.1186/s13023-017-0738-6 · Cited by 38
What do stakeholders expect from patient engagement: Are these expectations being met?
Boudes, M., Robinson, P., Bertelsen, N., Brooke, N. J., Hoos, A., Boutin, M., Geißler, J., & Sargeant, I. (2018) · Health Expectations · doi:10.1111/hex.12797 · Cited by 38
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Ball, S. L., Harshfield, A., Carpenter, A., Bertscher, A., & Marjanovic, S. (2019) · RAND Corporation eBooks · doi:10.7249/rr2678 · Cited by 38
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Framework for patient, family-centred care within an Australian Community Hospital: development and description
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“Given the near ‐ unanimous recognition that the biggest gap in this area of research is the lack of evidence on impact gained through rigorous evaluation, 43,57,58,61,90 the small number of impact ‐ focused models and frameworks is noteworthy.”
Background
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Conneely, M., Boland, P., O’Neill, A., Byrne, D., Cronin, S., Quinn, D., Trépel, D., Leahy, S., Salsberg, J., Galvin, R., et al. (2020) · HRB Open Research · doi:10.12688/hrbopenres.12979.1 · Cited by 33
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Ratcliff, C. G., Vinson, C., Milbury, K., & Badr, H. (2018) · Journal of Psychosocial Oncology · doi:10.1080/07347332.2018.1498426 · Cited by 32
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Ellis, L. E., & KASS, N. E. (2017) · Journal of Comparative Effectiveness Research · doi:10.2217/cer-2016-0075 · Cited by 33
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Stallings, S., Boyer, A. P., Joosten, Y. A., Novak, L. L., Richmond, A., Vaughn, Y. C., & Wilkins, C. H. (2019) · Health Expectations · doi:10.1111/hex.12937 · Cited by 32
Comparative analysis of stakeholder experiences with an online approach to prioritizing patient-centered research topics
Khodyakov, D., Grant, S., Meeker, D., Booth, M. J., Pacheco-Santivanez, N., & Kim, K. K. (2016) · Journal of the American Medical Informatics Association · doi:10.1093/jamia/ocw157 · Cited by 30
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Carr, E., Wallace, J. E., Pater, R., & Gross, D. P. (2019) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph16081472 · Cited by 36
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Gierisch, J. M., Hughes, J. M., Williams, J. W., Gordon, A. M., & Goldstein, K. M. (2019) · Medical Care · doi:10.1097/mlr.0000000000001174 · Cited by 30
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Pearce, T., Maple, M. J., Wayland, S., McKay, K., Woodward, A., Brooks, A., & Shakeshaft, A. P. (2022) · Health Research Policy and Systems · doi:10.1186/s12961-022-00835-0 · Cited by 32
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Authors: Esmail, L., Moore, E., & Rein, A.
Affiliations: AcademyHealth (US)
ORCID: Esmail, Laura
Moore, Emily
Venue: Journal of Comparative Effectiveness Research
Publisher: Becaris Publishing Limited
Published: 2015-03
Volume: 4
Issue: 2
Pages: 133-145
ISSN: 2042-6305 (ISSN-L)
2042-6313
DOI: 10.2217/cer.14.79
OpenAlex: W2096611776
Cited by: 502
References: 68
Citations by year: 2026: 32 · 2025: 43 · 2024: 65 · 2023: 59 · 2022: 58 · 2021: 57 · 2020: 52 · 2019: 41 · 2018: 45 · 2017: 31 · 2016: 14 · 2015: 3
FWCI: 5.62
Type: journal article
Language: en
Open access: hybrid
doi.org
Licence: cc-by-nc-nd
Locations: Journal of Comparative Effectiveness Research (publishedVersion, cc-by-nc-nd)
PubMed (publishedVersion)
Topics: Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Community Health and Development
Keywords: patient engagement, stakeholder engagement, engagement outcomes, return on investment
MeSH terms: Humans, Patient Participation, Professional-Patient Relations, Comparative Effectiveness Research, Patient Outcome Assessment

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Evaluating patient and stakeholder engagement in research: moving from theory to practice

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