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

A Typology of Public Engagement Mechanisms

Rowe, G., & Frewer, L. J. (2005) · Science Technology & Human Values · doi:10.1177/0162243904271724 · Cited by 1,860 · see citing works

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 · see citing works

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 · see citing works

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 · see citing works

Nothing about us without us: disability oppression and empowerment

Charlton, J. I. (1998) · Choice Reviews Online · doi:10.5860/choice.36-0640 · Cited by 1,126 · see citing works

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 · see citing works

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 · see citing works

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 956 · see citing works

Evaluating Public-Participation Exercises: A Research Agenda

Rowe, G., & Frewer, L. J. (2004) · Science Technology & Human Values · doi:10.1177/0162243903259197 · Cited by 882 · see citing works

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 · see citing works

The Patient-Centered Outcomes Research Institute (PCORI) National Priorities for Research and Initial Research Agenda

Beal, A. C. (2012) · JAMA · doi:10.1001/jama.2012.500 · Cited by 625 · see citing works

A New Taxonomy for Stakeholder Engagement in Patient-Centered Outcomes Research

Concannon, T. W., Meißner, P., Grunbaum, J. A., McElwee, N. E., Guise, J., Santa, J. S., Conway, P. H., Daudelin, D. H., Morrato, E. H., & Leslie, L. K. (2012) · Journal of General Internal Medicine · doi:10.1007/s11606-012-2037-1 · Cited by 532 · see citing works

Community engagement in research: Frameworks for education and peer review

Ahmed, S. M., & Palermo, A.-G. S. (2010) · American Journal of Public Health · doi:10.2105/ajph.2009.178137 · Cited by 509 · see citing works

Consumer involvement in health research: a review and research agenda

Boote, J. D., Telford, R., & Cooper, C. L. (2002) · Health Policy · doi:10.1016/s0168-8510(01)00214-7 · Cited by 506 · see citing works

A Systematic Review of Stakeholder Engagement in Comparative Effectiveness and Patient-Centered Outcomes Research

Concannon, T. W., Fuster, M., Saunders, T. S., Patel, K., Wong, J. B., Leslie, L. K., & Lau, J. (2014) · Journal of General Internal Medicine · doi:10.1007/s11606-014-2878-x · Cited by 470 · see citing works

A Systematic Review of Community‐Based Participatory Research to Enhance Clinical Trials in Racial and Ethnic Minority Groups

De Las Nueces, D., Hacker, K., DiGirolamo, A., & Hicks, L. S. (2012) · Health Services Research · doi:10.1111/j.1475-6773.2012.01386.x · Cited by 400 · see citing works

Public participation in health care priority setting: A scoping review

Mitton, C., Smith, N., Peacock, S. J., Evoy, B. E., & Abelson, J. (2009) · Health Policy · doi:10.1016/j.healthpol.2009.01.005 · Cited by 399 · see citing works

The GRIPP checklist: Strengthening the quality of patient and public involvement reporting in research

Staniszewska, S., Brett, J., Mockford, C., & Barber, R. (2011) · International Journal of Technology Assessment in Health Care · doi:10.1017/s0266462311000481 · Cited by 369 · see citing works

A multidimensional conceptual framework for analysing public involvement in health services research

Oliver, S. R., Rees, R. W., Clarke‐Jones, L., Milne, R., Oakley, A., Gabbay, J., Stein, K., Buchanan, P., & Gyte, G. M. (2008) · Health Expectations · doi:10.1111/j.1369-7625.2007.00476.x · Cited by 344 · see citing works

Stakeholder participation in comparative effectiveness research: defining a framework for effective engagement

Deverka, P., Lavallee, D., Desai, P., Esmail, L., Ramsey, S., Veenstra, D., & Tunis, S. (2012) · Journal of Comparative Effectiveness Research · doi:10.2217/cer.12.7 · Cited by 307 · see citing works

Revolution or evolution: the challenges of conceptualizing patient and public involvement in a consumerist world

Tritter, J. Q. (2009) · Health Expectations · doi:10.1111/j.1369-7625.2009.00564.x · Cited by 302 · see citing works

Patients' perspectives in health technology assessment: A route to robust evidence and fair deliberation

Facey, K. M., Boivin, A., Gracia, J., Hansen, H. P., Scalzo, A. L., Mossman, J., & Single, A. N. V. (2010) · International Journal of Technology Assessment in Health Care · doi:10.1017/s0266462310000395 · Cited by 266 · see citing works

Priority setting: what constitutes success? A conceptual framework for successful priority setting

Sibbald, S. L., SINGER, P. A., Upshur, R. E. G., & Martin, D. K. (2009) · BMC Health Services Research · doi:10.1186/1472-6963-9-43 · Cited by 251 · see citing works

A Framework for Clarifying “Participation” in Participatory Research to Prevent its Rejection for the Wrong Reasons

Barreteau, O., Bots, P. W. G., & Daniell, K. A. (2010) · Ecology and Society · doi:10.5751/es-03186-150201 · Cited by 243 · see citing works

Patients as Partners in Responsive Research: Methodological Notions for Collaborations in Mixed Research Teams

Abma, T., Nierse, C. J., & Widdershoven, G. (2009) · Qualitative Health Research · doi:10.1177/1049732309331869 · Cited by 226 · see citing works

‘Talking the talk or walking the walk?’ A bibliometric review of the literature on public involvement in health research published between 1995 and 2009

Boote, J. D., Wong, R., & Booth, A. (2012) · Health Expectations · doi:10.1111/hex.12007 · Cited by 216 · see citing works

Process and outcome constructs for evaluating community-based participatory research projects: a matrix of existing measures

Sandoval, J. A., Lucero, J. E., OETZEL, J. G., Avila, M., Belone, L., Mau, M. L. M., Pearson, C. R., Tafoya, G., Duran, B., Rios, L. I., et al. (2011) · Health Education Research · doi:10.1093/her/cyr087 · Cited by 214 · see citing works

What does it mean to involve consumers successfully in NHS research? A consensus study

Telford, R., Boote, J. D., & Cooper, C. L. (2004) · Health Expectations · doi:10.1111/j.1369-7625.2004.00278.x · Cited by 182 · see citing works

Integrating research and action: a systematic review of community-based participatory research to address health disparities in environmental and occupational health in the USA: Table 1

Cook, W. K. (2008) · Journal of Epidemiology & Community Health · doi:10.1136/jech.2007.067645 · Cited by 181 · see citing works

An Interactive and Contextual Model of Community-University Collaborations for Research and Action

Suarez‐Balcazar, Y., Harper, G. W., & Lewis, R. K. (2005) · Health Education & Behavior · doi:10.1177/1090198104269512 · Cited by 174 · see citing works

Nothing About Us Without Us: Disability Oppression and Empowerment

Stonnington, H. H. (1998) · JAMA · doi:10.1001/jama.280.16.1456-a · Cited by 169 · see citing works

Assessing the Impacts of Public Participation: Concepts, Evidence and Policy ImplicationsPreprint

Abelson, J., & Gauvin, F. (2006) · RePEc: Research Papers in Economics · Cited by 159 · see citing works

The PIRICOM study : a systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research

Brett, J., Staniszewska, S. H., Mockford, C., Seers, K., Herron‐Marx, S., & Bayliss, H. (2010) · University of Warwick · doi:10.82444/warw.33667912 · Cited by 151 · see citing works

Public involvement in the systematic review process in health and social care: A narrative review of case examples

Boote, J. D., Baird, W. O., & Sutton, A. (2011) · Health Policy · doi:10.1016/j.healthpol.2011.05.002 · Cited by 131 · see citing works

Close to the bench as well as at the bedside: involving service users in all phases of translational research

Callard, F. J., Rose, D. S., & Wykes, T. (2011) · Health Expectations · doi:10.1111/j.1369-7625.2011.00681.x · Cited by 130 · see citing works

User involvement in the development of a research bid: barriers, enablers and impacts¹

Staniszewska, S., Jones, N., Newburn, M., & Marshall, S. (2007) · Health Expectations · doi:10.1111/j.1369-7625.2007.00436.x · Cited by 112 · see citing works

How Best To Engage Patients, Doctors, And Other Stakeholders In Designing Comparative Effectiveness Studies

Hoffman, A., Montgomery, R., Aubry, W. M., & Tunis, S. (2010) · Health Affairs · doi:10.1377/hlthaff.2010.0675 · Cited by 112 · see citing works

Can the impact of public involvement on research be evaluated? A mixed methods study

Barber, R., Boote, J. D., Parry, G. D., Cooper, C. L., Yeeles, P., & Cook, S. (2011) · Health Expectations · doi:10.1111/j.1369-7625.2010.00660.x · Cited by 109 · see citing works

Evaluating the impact of service user involvement on research: a prospective case study

Barber, R., Beresford, P., Boote, J., Cooper, C., & Faulkner, A. (2011) · International Journal of Consumer Studies · doi:10.1111/j.1470-6431.2011.01017.x · Cited by 107 · see citing works

Principles and indicators of successful consumer involvement in NHS research: results of a Delphi study and subgroup analysis

Boote, J., Barber, R., & Cooper, C. (2006) · Health Policy · doi:10.1016/j.healthpol.2005.03.012 · Cited by 105 · see citing works

The impact of service user involvement in research

Minogue, V., Boness, J., Brown, A., & Girdlestone, J. (2005) · International Journal of Health Care Quality Assurance · doi:10.1108/09526860510588133 · Cited by 104 · see citing works

Keeping Service User Involvement in Research Honest

McLaughlin, H. (2009) · The British Journal of Social Work · doi:10.1093/bjsw/bcp064 · Cited by 97 · see citing works

Consumer Participation in Mental Health Research: Articulating a Model to Guide Practice

Happell, B., & Roper, C. (2007) · Australasian Psychiatry · doi:10.1080/10398560701320113 · Cited by 91 · see citing works

Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: a modified Delphi study

Snape, D., Kirkham, J., Preston, J., Popay, J., Britten, N., Collins, M., Froggatt, K., Gibson, A., Lobban, F., Wyatt, K., et al. (2014) · BMJ Open · doi:10.1136/bmjopen-2013-004217 · Cited by 88 · see citing works

Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study

Lindenmeyer, A., Hearnshaw, H., Sturt, J. A., Ormerod, R., & Aitchison, G. (2007) · Health Expectations · doi:10.1111/j.1369-7625.2007.00451.x · Cited by 88 · see citing works

The role of service user research in generating knowledge-based health and social care: from conflict to contribution

Beresford, P. (2007) · Evidence & Policy · doi:10.1332/174426407781738074 · Cited by 65 · see citing works

Operationalising a model framework for consumer and community participation in health and medical research

Saunders, C., Crossing, S., Penman, A., Butow, P. N., & Girgis, A. (2007) · Australia and New Zealand Health Policy · doi:10.1071/hp070413 · Cited by 59 · see citing works

Engaging Stakeholders To Identify and Prioritize Future Research Needs

O’Haire, C., McPheeters, M. L., Nakamoto, E., LaBrant, L., Most, C., Lee, K., Graham, E., Cottrell, E., & Guise, J. (2011) · Europe PMC (PubMed Central) · Cited by 59 · see citing works

Stakeholder engagement in comparative effectiveness research: how will we measure success?

Lavallee, D. C., Williams, C. J., Tambor, E. S., & Deverka, P. A. (2012) · Journal of Comparative Effectiveness Research · doi:10.2217/cer.12.44 · Cited by 57 · see citing works

The impact of consumer involvement in research: an evaluation of consumer involvement in the London Primary Care Studies Programme

Wyatt, K. M., Carter, M., Mahtani, V. M., Barnard, A., Hawton, A., & Britten, N. (2008) · Family Practice · doi:10.1093/fampra/cmn019 · Cited by 51 · see citing works

Using a Collaboratory Model to Translate Social Work Research Into Practice and Policy

Allen‐Meares, P., Hudgins, C. A., Engberg, M. E., & Lessnau, B. (2004) · Research on Social Work Practice · doi:10.1177/1049731504272345 · Cited by 44 · see citing works

What is involvement in research and what does it achieve? Reflections on a pilot study of the personal costs of stroke

McKevitt, C., Fudge, N., & Wolfe, C. D. A. (2009) · Health Expectations · doi:10.1111/j.1369-7625.2009.00573.x · Cited by 40 · see citing works

User involvement leads to more ethically sound research

Staley, K., & Minogue, V. (2006) · Clinical Ethics · doi:10.1258/147775006777254489 · Cited by 40 · see citing works

The PCORI Methodology Report

Newhouse, R. P. (2017) · doi:10.25302/67.2017 · Cited by 34 · see citing works

Professionals and the public: power or partnership in health research?

Robinson, L. J., Newton, J. L., & Dawson, P. (2010) · Journal of Evaluation in Clinical Practice · doi:10.1111/j.1365-2753.2010.01572.x · Cited by 33 · see citing works

Involving the public in priority setting: a case study using discrete choice experiments

Watson, V., Carnon, A., Ryan, M., & Cox, D. (2011) · Journal of Public Health · doi:10.1093/pubmed/fdr102 · Cited by 32 · see citing works

Ensuring public and patient participation in research: a case study in infrastructure development in one UK Research and Development consortium

Howe, A. C., MacDonald, H., Barrett, B., & Little, B. (2006) · Primary Health Care Research & Development · doi:10.1191/1463423606pc269oa · Cited by 26 · see citing works

Impact of public involvement in research on quality of life and society: a case study of research career trajectories

Williamson, T., Brogden, J., Jones, E., & Ryan, J. (2010) · International Journal of Consumer Studies · doi:10.1111/j.1470-6431.2010.00909.x · Cited by 25 · see citing works

Research, Engagement, and Public Bioethics: Promoting Socially Robust Science

Pickersgill, M. (2011) · Journal of Medical Ethics · doi:10.1136/jme.2010.041954 · Cited by 25 · see citing works

Patient and public involvement in translative healthcare research

Savory, C. (2010) · Clinical Governance An International Journal · doi:10.1108/14777271011063823 · Cited by 24 · see citing works

Participating in community research: exploring the experiences of lay researchers in Bradford

Newell, C., & South, J. (2009) · Community Work & Family · doi:10.1080/13668800802627934 · Cited by 23 · see citing works

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

Workman, T. A., Maurer, M. E., & Carman, K. L. (2013) · Journal of Comparative Effectiveness Research · doi:10.2217/cer.13.6 · Cited by 20 · see citing works

Public involvement in the design and conduct of clinical trials: a narrative review of case examples

Boote, J. D., Baird, W. O., & Sutton, A. (2011) · Trials · doi:10.1186/1745-6215-12-s1-a82 · Cited by 20 · see citing works

A potential model for the first all Wales mental health service user and carer‐led research group

Wilson, C., Fothergill, A., & Rees, H. (2009) · Journal of Psychiatric and Mental Health Nursing · doi:10.1111/j.1365-2850.2009.01473.x · Cited by 16 · see citing works

Incorporating stakeholder perspectives in developing a translation table framework for comparative effectiveness research

Gliklich, R. E., Leavy, M. B., Velentgas, P., Dreyer, N. A., Tunis, S., Mohr, P. E., Messner, D. A., Moloney, R., Karkare, S. U., Dubois, R. W., et al. (2012) · Journal of Comparative Effectiveness Research · doi:10.2217/cer.12.25 · Cited by 10 · see citing works

Involving and engaging patients in cancer and palliative care research: workshop presentation

Johnston, B. M., Forbat, L., & Hubbard, G. (2008) · International Journal of Palliative Nursing · doi:10.12968/ijpn.2008.14.11.31760 · Cited by 6 · see citing works

Science and the community: a collaborative model for integration of research within the community.

Weglicki, L. S., Rice, V. H., & Hammad, A. S. (2005) · PubMed · Cited by 3 · see citing works

Research co-design in health: a rapid overview of reviews

Slattery, P., Saeri, A. K., & Bragge, P. (2020) · Health Research Policy and Systems · doi:10.1186/s12961-020-0528-9 · Cited by 1,313 · see citing works

Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

Greenhalgh, T., Hinton, L., Finlay, T., Macfarlane, A., Fahy, N., Clyde, B., & Chant, A. (2019) · Health Expectations · doi:10.1111/hex.12888 · Cited by 1,059 · see citing works

Patient engagement in Canada: a scoping review of the ‘how’ and ‘what’ of patient engagement in health research

Manafò, E., Petermann, L., Mason-Lai, P., & Vandall‐Walker, V. (2018) · Health Research Policy and Systems · doi:10.1186/s12961-018-0282-4 · Cited by 483 · see citing works

How to engage stakeholders in research: design principles to support improvement

Boaz, A., Hanney, S. R., Borst, R. A. J., O’Shea, A., & Kok, M. O. (2018) · Health Research Policy and Systems · doi:10.1186/s12961-018-0337-6 · Cited by 471 · see citing works

The PCORI Engagement Rubric: Promising Practices for Partnering in Research

Sheridan, S. E., Schrandt, S., Forsythe, L. P., Hilliard, T. S., & Paez, K. (2017) · The Annals of Family Medicine · doi:10.1370/afm.2042 · Cited by 360 · see citing works

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

Forsythe, L. P., Ellis, L. E., Edmundson, L., Sabharwal, R., Rein, A. L., Konopka, K., & Frank, L. B. (2015) · Journal of General Internal Medicine · doi:10.1007/s11606-015-3450-z · Cited by 325 · see citing works

Preparing for patient partnership: A scoping review of patient partner engagement and evaluation in research

Bird, M., Ouellette, C., Whitmore, C., Li, L. H., Nair, K., McGillion, M. H., Yost, J., Banfield, L. E., Campbell, E., & Carroll, S. L. (2020) · Health Expectations · doi:10.1111/hex.13040 · Cited by 312 · see citing works

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities

Harrison, J. D., Auerbach, A. D., Anderson, W., Fagan, M., Carnie, M., Hanson, C., Banta, J., Symczak, G., Robinson, E., Schnipper, J., et al. (2019) · Health Expectations · doi:10.1111/hex.12873 · Cited by 286 · see citing works

Patient and public engagement in research and health system decision making: A systematic review of evaluation tools

Boivin, A., L'Espérance, A., Gauvin, F., Dumez, V., Macaulay, A. C., Lehoux, P., & Abelson, J. (2018) · Health Expectations · doi:10.1111/hex.12804 · Cited by 285 · see citing works

“When Offered to Participate”: A Systematic Review and Meta-Analysis of Patient Agreement to Participate in Cancer Clinical Trials

Unger, J. M., Hershman, D. L., Till, C., Minasian, L. M., Osarogiagbon, R. U., Fleury, M. E., & Vaidya, R. (2020) · JNCI Journal of the National Cancer Institute · doi:10.1093/jnci/djaa155 · Cited by 270 · see citing works

Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

Petkovic, J., Riddle, A. Y., Akl, E. A., Khabsa, J., Lytvyn, L., Atwere, P., Campbell, P., Chalkidou, K., Chang, S., Crowe, S., et al. (2020) · Systematic Reviews · doi:10.1186/s13643-020-1272-5 · Cited by 241 · see citing works

Pragmatism as a paradigm for patient‐oriented research

Allemang, B. A., Sitter, K. C., & Dimitropoulos, G. (2021) · Health Expectations · doi:10.1111/hex.13384 · Cited by 243 · see citing works

Emerging Guidelines for Patient Engagement in Research

Kirwan, J., de Wit, M. P. T., Frank, L. B., Haywood, K. L., Salek, S., Brace-McDonnell, S. J., Lyddiatt, A., Barbic, S. P., Alonso, J., Guillemin, F., et al. (2016) · Value in Health · doi:10.1016/j.jval.2016.10.003 · Cited by 221 · see citing works

Practical Guidance for Involving Stakeholders in Health Research

Concannon, T. W., Grant, S., Welch, V. A., Petkovic, J., Selby, J. V., Crowe, S., Synnot, A., Greer-Smith, R., Mayo‐Wilson, E., Tambor, E. S., et al. (2018) · Journal of General Internal Medicine · doi:10.1007/s11606-018-4738-6 · Cited by 220 · see citing works

An empirically based conceptual framework for fostering meaningful patient engagement in research

Hamilton, C. B., Hoens, A. M., Backman, C. L., McKinnon, A., McQuitty, S., English, K., & LI, L. C. (2017) · Health Expectations · doi:10.1111/hex.12635 · Cited by 207 · see citing works

Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a <scp>UK</scp>‐based qualitative interview study

Crocker, J. C., Boylan, A., Bostock, J., & Locock, L. (2017) · Health Expectations · doi:10.1111/hex.12479 · Cited by 194 · see citing works

Patient engagement in research related to dementia: A scoping review

Bethell, J., Commisso, E., Rostad, H. M., Puts, M. T. E., Babineau, J., Grinbergs‐Saull, A., Wighton, M. B., Hammel, J., Doyle, E., Nadeau, S., et al. (2018) · Dementia · doi:10.1177/1471301218789292 · Cited by 177 · see citing works

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Vat, L. E., Finlay, T., Jan Schuitmaker‐Warnaar, T., Fahy, N., Robinson, P., Boudes, M., Diaz, A., Ferrer, E., Hivert, V., Purman, G., et al. (2020) · Health Expectations · doi:10.1111/hex.12951 · Cited by 173 · see citing works

Defining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient-Centered Special Interest Group

Harrington, R. L., Hanna, M., Oehrlein, E. M., Camp, R., Wheeler, R., Cooblall, C., Tesoro, T., Scott, A., von Gizycki, R., Nguyen, F., et al. (2020) · Value in Health · doi:10.1016/j.jval.2020.01.019 · Cited by 179 · see citing works

Assessing the Financial Value of Patient Engagement: A Quantitative Approach from CTTI’s Patient Groups and Clinical Trials Project

Levitan, B. S., Getz, K. A., Eisenstein, E. L., Goldberg, M., Harker, M. J., Hesterlee, S. E., Patrick‐Lake, B., Roberts, J. N., & DiMasi, J. A. (2017) · Therapeutic Innovation & Regulatory Science · doi:10.1177/2168479017716715 · Cited by 158 · see citing works

Understanding the Influence and Impact of Stakeholder Engagement in Patient-centered Outcomes Research: a Qualitative Study

Maurer, M. E., Mangrum, R., Hilliard, T. S., Amolegbe, A., Carman, K. L., Forsythe, L. P., Mosbacher, R., Lesch, J. K., & Woodward, K. P. (2022) · Journal of General Internal Medicine · doi:10.1007/s11606-021-07104-w · Cited by 170 · see citing works

Measuring Community‐Engaged Research Contexts, Processes, and Outcomes: A Mapping Review

Luger, T. M., HAMILTON, A. B., & True, G. (2020) · Milbank Quarterly · doi:10.1111/1468-0009.12458 · Cited by 156 · see citing works

Using qualitative Health Research methods to improve patient and public involvement and engagement in research

Rolfe, D. E., Ramsden, V. R., Banner, D., & Graham, I. D. (2018) · Research Involvement and Engagement · doi:10.1186/s40900-018-0129-8 · Cited by 135 · see citing works

What constitutes meaningful engagement for patients and families as partners on research teams?

Black, A., Strain, K., Wallsworth, C., Charlton, S.-G., Chang, W., McNamee, K., & Hamilton, C. B. (2018) · Journal of Health Services Research & Policy · doi:10.1177/1355819618762960 · Cited by 134 · see citing works

Development and pre-testing of the Patient Engagement In Research Scale (PEIRS) to assess the quality of engagement from a patient perspective

Hamilton, C. B., Hoens, A. M., McQuitty, S., McKinnon, A., English, K., Backman, C. L., Azimi, T., Khodarahmi, N., & LI, L. C. (2018) · PLoS ONE · doi:10.1371/journal.pone.0206588 · Cited by 133 · see citing works

Global Public Attitudes About Clinical Research and Patient Experiences With Clinical Trials

Anderson, A., Borfitz, D., & Getz, K. A. (2018) · JAMA Network Open · doi:10.1001/jamanetworkopen.2018.2969 · Cited by 134 · see citing works

Giving voice to older adults living with frailty and their family caregivers: engagement of older adults living with frailty in research, health care decision making, and in health policy

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The impact of patient and public involvement in health research versus healthcare: A scoping review of reviews

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Questioning patient engagement: research scientists’ perceptions of the challenges of patient engagement in a cardiovascular research network

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Engaging patients and consumers in research evidence: Applying the conceptual model of patient and family engagement

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Interdisciplinary team science and the public: Steps toward a participatory team science.

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Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement

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Towards an Implementation‐STakeholder Engagement Model (I‐STEM) for improving health and social care services

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Valuing All Voices: refining a trauma-informed, intersectional and critical reflexive framework for patient engagement in health research using a qualitative descriptive approach

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Facilitating public and patient involvement in basic and preclinical health research

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Methods for Involving Older People in Health Research—A Review of the Literature

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Patient and public involvement in doctoral research: reflections and experiences of the PPI contributors and researcher

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The Dimensions of Tokenism in Patient and Family Engagement: A Concept Analysis of the Literature

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Experience of Health Leadership in Partnering With University-Based Researchers in Canada – A Call to "Reimagine" Research

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The importance of measuring the impact of patient-oriented research

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Recruitment of caregivers into health services research: lessons from a user-centred design study

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Measuring the Impact of Patient-Engaged Research: How a Methods Workshop Identified Critical Outcomes of Research Engagement

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Patient and Researcher Engagement in Health Research: A Parent’s Perspective

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Enhancing translational researchers’ ability to collaborate with community stakeholders: Lessons from the Community Engagement Studio

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Benefits, barriers and recommendations for youth engagement in health research: combining evidence-based and youth perspectives

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The use of co-design in developing physical activity interventions for older adults: a scoping review

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Top ten priorities for anesthesia and perioperative research: a report from the Canadian Anesthesia Research Priority Setting Partnership

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Developing a Hypothetical Implementation Framework of Expectations for Monitoring Early Signs of Psychosis Relapse Using a Mobile App: Qualitative Study

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Strategies to facilitate shared decision‐making in long‐term care

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Patient involvement in clinical trials: motivation and expectations differ between patients and researchers involved in a trial on urinary tract infections

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Conceptualising the initiation of researcher and research user partnerships: a meta-narrative review

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Evaluation of patient engagement in medicine development: A multi‐stakeholder framework with metrics

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Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research

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A holistic pathway to biosensor translation

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Patient and public involvement in doctoral research: Impact, resources and recommendations

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A rapid realist review of patient engagement in patient-oriented research and health care system impacts: part one

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Models and frameworks of patient engagement in health services research: a scoping review protocol

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Evaluating Patient, Family and Public Engagement in Health Services Improvement and System Redesign

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Evaluating health service outcomes of public involvement in health service design in high-income countries: a systematic review

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What makes it work? Exploring experiences of patient research partners and researchers involved in a long-term co-creative research collaboration

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Using Patient and Family Engagement Strategies to Improve Outcomes of Health Information Technology Initiatives: Scoping Review

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Exploring the impact of workforce turnover on the sustainability of evidence-based programs: A scoping review

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Positive Impacts of Adolescent Involvement in Health Research: An Umbrella Review

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Framework for Advancing the Reporting of Patient Engagement in Rheumatology Research Projects

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Methods guiding stakeholder engagement in planning a pragmatic study on changing stroke systems of care

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Patient, caregiver and clinician views on engagement in comparative effectiveness research

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Patient‐Engaged Research: Choosing the “Right” Patients to Avoid Pitfalls

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Moving patient-oriented research forward: thoughts from the next generation of knowledge translation researchers

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Perspectives and Experiences with Engaging Youth and Families in Research

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From participants to partners: reconceptualising authentic patient engagement roles in youth mental health research

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Evaluating the feasibility and acceptability of a co-design approach to developing an integrated model of care for people with multi-morbid COPD in rural Nepal: a qualitative study

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Exploring patient and family involvement in the lifecycle of an orphan drug: a scoping review

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What do stakeholders expect from patient engagement: Are these expectations being met?

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Stakeholder engagement in research: a scoping review of current evaluation methods

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Patient and public involvement in research: Enabling meaningful contributions

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Developing a Theory-Informed Smartphone App for Early Psychosis: Learning Points From a Multidisciplinary Collaboration

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A Systematic Review of Measures of Child Neglect

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Deliberative Engagement Methods for Patient-Centered Outcomes Research

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Framework for patient, family-centred care within an Australian Community Hospital: development and description

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Effects of consumers and health providers working in partnership on health services planning, delivery and evaluation

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Research priorities of women at risk for preterm birth: findings and a call to action

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Priorities of patients, caregivers and health‐care professionals for health research – A systematic review

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The PCORI Methodology Report

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A systematic review of theories, models and frameworks used for youth engagement in health research

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Evaluating the Impacts of Patient Engagement on Health Services Research Teams: Lessons from the Veteran Consulting Network

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A protocol for the establishment and evaluation of an older adult stakeholder panel for health services research

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Systemic challenges in bipolar disorder management: A patient‐centered approach

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Moving family interventions into the real world: What matters to oncology stakeholders?

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Patient engagement in patient-centered outcomes research: challenges, facilitators and actions to strengthen the field

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A taxonomy of impacts on clinical and translational research from community stakeholder engagement

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Comparative analysis of stakeholder experiences with an online approach to prioritizing patient-centered research topics

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Evaluating the Relationship between Well-Being and Living with a Dog for People with Chronic Low Back Pain: A Feasibility Study

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Qualitative Exploration of Engaging Patients as Advisors in a Program of Evidence Synthesis

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A mixed-methods systematic review of suicide prevention interventions involving multisectoral collaborations

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Patient engagement in health implementation research: A logic model

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Participatory research with carers: A systematic review and narrative synthesis

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Is this really Empowerment? Enhancing our understanding of empowerment in patient and public involvement within clinical research

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Utilizing patient advocates in Parkinson’s disease: A proposed framework for patient engagement and the modern metrics that can determine its success

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A Systematic Review of Stakeholder Engagement in Comparative Effectiveness and Patient-Centered Outcomes Research

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