Vos T, Barber RM, Bell B, Bertozzi-Villa A, Biryukov S, Bolliger I, Duan L. Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases and injuries in 188 countries, 1990–2013: a systematic analysis for the global burden of disease study 2013. Lancet. 2015;386(9995):743–800.
Lozano R, Naghavi M, Foreman K, Lim S, Shibuya K, Aboyans V, Al Mazroa MA. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the global burden of disease study 2010. Lancet. 2012;380(9859):2095–128.
Broemeling AM, Watson DE, Prebtani F. Population patterns of chronic health conditions, co-morbidity and healthcare use in Canada: Implications for policy and practice. Healthc Q. 2007;11(3):70–6.
Straus SE, Tetroe J, Graham I. Defining knowledge translation. Can Med Assoc J. 2009;181(3–4):165–8.
Grol R, Grimshaw J. From best evidence to best practice: effective implementation of change in patients' care. Lancet. 2003;362(9391):1225–30.
Kong T, Missouris C, Murdah M, MacGregor G. The use of HMG CoA reductase inhibitors following acute myocardial infarction in hospital practice. Postgrad Med J. 1998;74(876):600–1.
Bowen SJ, Graham ID. From knowledge translation to engaged scholarship: promoting research relevance and utilization. Arch Phys Med Rehabil. 2013;94(1):3–8.
Logan RL, Scott PJ. Uncertainty in clinical practice: implications for quality and costs of health care. Lancet. 1996;347(9001):595–8.
Wennberg JE. Time to tackle unwarranted variations in practice. BMJ. 2011;342.
Ramanujam R, Rousseau DM. The challenges are organizational not just clinical. J Organ Behav. 2006;27(7):811–27.
Ford L, Kaluzny AD, Sondik E. Diffusion and adoption of state-of-the art therapy. Semin Oncol. 1990;17(4):485–94.
Bero LA, Grilli R, Grimshaw JM, Harvey E, Oxman AD, Thomson MA. Closing the gap between research and practice: an overview of systematic reviews of interventions to promote the implementation of research findings. The Cochrane effective practice and organization of care review group. BMJ. 1998;317(7156):465–8.
Nowell L. Pragmatism and integrated knowledge translation: exploring the compatibilities and tensions. Nursing Open. 2015;2(3):141–8.
Kothari A, Sibbald SL, Wathen CN. Evaluation of partnerships in a transnational family violence prevention network using an integrated knowledge translation and exchange model: a mixed methods study. Health Res Policy Syst. 2014;12(1):25.
Graham ID, Logan J, Harrison MB, Straus SE, Tetroe J, Caswell W, Robinson N. Lost in knowledge translation: time for a map? J Contin Educ Health Prof. 2006;26(1):13–24.
Canadian Institutes of Health Research. A guide to knowledge translation at CIHR: Integrated and end of grant approaches. http://www.cihr-irsc.gc.ca/e/45321.html. Accessed 10th Jan 2019.
Boyer EL, Moser D, Ream TC, Braxton JM. Scholarship reconsidered: priorities of the professoriate. New York: Wiley; 2015.
Van de Ven AH. Engaged scholarship: a guide for organizational and social research. Oxford: Oxford University Press; 2007.
Nowotny H, Scott P, Gibbons M, Scott PB. Re-thinking science: knowledge and the public in an age of uncertainty. Cambridge: Polity; 2001.
Jagosh J, Bush PL, Salsberg J, Macaulay AC, Greenhalgh T, Wong G, Pluye P. A realist evaluation of community-based participatory research: partnership synergy, trust building and related ripple effects. BMC Public Health. 2015;15(1):725.
Greenhalgh T, Weiringa S. Is it time to drop the KT metaphor? A critical literature review. J R Soc Med. 2011;104(12):501–9.
Bowen S, Graham ID. Integrated knowledge translation. In: Straus SE, Bowen S, Graham ID, editors. Knowledge translation in health care: moving from evidence to practice. 2nd ed. Chichester: John Wiley; 2013. p. 14–23.
Mitton C, Adair CE, McKenzie E, Patten SB, Perry BW. Knowledge transfer and exchange: review and synthesis of the literature. Milbank Q. 2007;85(4):729–68.
Rycroft-Malone J, Burton CR, Bucknall T, Graham ID, Hutchinson AM, Stacey D. Collaboration and co-production of knowledge in healthcare: opportunities and challenges. Int J Health Policy Manag. 2016;5(4):221.
Kothari A, McCutcheon C, Graham ID. Defining integrated knowledge translation and moving forward: a response to recent commentaries. Int J Health Policy Manag. 2017;6(5):299.
World Health Organization. Ninth Futures Forum on health systems governance and public participation. 2006. www.euro.who.int/document/e89766.pdf. Accessed 10 Jan 2019.
Canadian Institutes for Health Research. CIHR’s Framework for Citizen Engagement. http://www.cihr-irsc.gc.ca/e/41270.html. Accessed 10 Jan 2019.
Venuta R, Graham ID. Involving citizens and patients in health research. J Ambul Care Manag. 2010;33(3):215–22.
Oliver S, Armes DG, Gyte G. Public involvement in setting a national research agenda: a mixed methods evaluation. Patient. 2009;2(3):179–90.
Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637–50.
Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: a systematic review. Int J Qual Health Care. 2012;24(1):28–38.
Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Erwin P. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14(1):89.
Canadian Institutes for Health Research. Strategy for Patient-Oriented Research: Patient Engagement Framework. 2014. http://www.cihr-irsc.gc.ca/e/48413.html Accessed 10 Jan 2019.
Canadian Institutes for Health Research. Strategy for Patient-Oriented Research: Improving health outcomes through evidence-informed care. 2011. http://www.cihr-irsc.gc.ca/e/44000.html. Accessed 10 Jan 2019.
National Institute for Health Research. Briefing notes for researchers: involving the public in NHS, public health and social care research. 2012. http://www.invo.org.uk/posttypepublication/involve-briefing-notes-for-researchers/.
Patient-Centred Outcomes Research Institute. PCORI’s strategic plan. 2013. https://www.pcori.org/sites/default/files/PCORI-Strategic-Plan.pdf. Accessed on 10 Jan 2019.
McKevitt C. Experience, knowledge and evidence: a comparison of research relations in health and anthropology. Evidence Policy. 2013;9(1):113–30.
Chu LF, Utengen A, Kadry B, Kucharski SE, Campos H, Crockett J, Clauson KA. “Nothing about us without us”—patient partnership in medical conferences. BMJ. 2016;354:i3883.
Charlton JI. Nothing about us without us: disability oppression and empowerment. Los Angeles: University of California Press; 1998.
Caron-Flinterman JF, Broerse JE, Bunders JF. The experiential knowledge of patients: a new resource for biomedical research? Soc Sci Med. 2005;60(11):2575–84.
Boote J, Baird W, Sutton A. Public involvement in the design and conduct of clinical trials: a narrative review of case examples. Trials. 2011;12(1):A82.
Wynne B. Public engagement as a means of restoring public trust in science–hitting the notes, but missing the music? Public Health Genomics. 2006;9(3):211–20.
Ward PR, Thompson J, Barber R, Armitage CJ, Boote JD, Cooper CL, Jones GL. Critical perspectives on ‘consumer involvement’ in health research: epistemological dissonance and the know-do gap. J Sociol. 2010;46(1):63–82.
Boaz A, Biri D, McKevitt C. Rethinking the relationship between science and society: has there been a shift in attitudes to patient and public involvement and public engagement in science in the United Kingdom? Health Expect. 2016;19(Suppl 3):592–601.
Graham ID, Tetroe J. Some theoretical underpinnings of knowledge translation. Acad Emerg Med. 2007;14(11):936–41.
Grimshaw JM, Eccles MP, Lavis JN, Hill SJ, Squires JE. Knowledge translation of research findings. Implement Sci. 2012;7(1):50.
Harlos K, Tetroe J, Graham ID, Bird M, Robinson N. Mining the management literature for insights into implementing evidence-based change in healthcare. Healthcare Policy. 2012;8(1):33–48.
Woolf SH. The meaning of translational research and why it matters. JAMA. 2008;299(2):211–3.
Ivers NM, Grimshaw JM. Reducing research waste with implementation laboratories. Lancet. 2016;388(10044):547.
Chalmers I, Bracken MB, Djulbegovic B, Garattini S, Grant J, Gulmezoglu MA, Howells DA, Ioannidis JPA, Oliver S. How to increase value and reduce waste when research priorities are set. Lancet. 2014;383(9912):156–65.
Fort DG, Herr TM, Shaw PL, Gutzman KE, Starren JB. Mapping the evolving definitions of translational research. J Clin Transl Sci. 2017;1(1):60–6.
Canadian Institutes of Health Research. Evaluation of KT funding opportunities. http://www.cihr-irsc.gc.ca/e/47332.html. Accessed on 10 Jan 2019.
Denis JL, Lomas J. Convergent evolution: the academic and policy roots of collaborative research. J Health Serv Res Policy. 2003;8(2):2–6.
Harrison MB, Graham ID. Roadmap for a participatory research–practice partnership to implement evidence. Worldviews Evid-Based Nurs. 2012;9(4):210–20.
Graham ID, Kothari A, McCutcheon C, and on behalf of the Integrated Knowledge Translation Research Network Project Leads. Moving knowledge into action for more effective practice, programmes and policy: Protocol for a research programme on integrated knowledge translation. Implement Sci. 2018;13(1):22.
Kothari A, Wathen CN. Integrated knowledge translation: digging deeper, moving forward. J Epidemiol Community Health. 2017;71(6):619–23.
Gagliardi AR, Webster F, Brouwers MC, Baxter NN, Finelli A, Gallinger S. How does context influence collaborative decision-making for health services planning, delivery and evaluation? BMC Health Serv Res. 2014;14(1):545.
Jull J, Giles A, Graham ID. Community-based participatory research and integrated knowledge translation: advancing the co-creation of knowledge. Implement Sci. 2017;12(1):150.
Lapaige V. “Integrated knowledge translation” for globally oriented public health practitioners and scientists: framing together a sustainable transfrontier knowledge translation vision. J Multidiscip Healthc. 2010;3:33.
McGrath PJ, Lingley-Pottie P, Emberly DJ, Thurston C, McLean C. Integrated knowledge translation in mental health: family help as an example. J Can Acad Child Adolesc Psychiatry. 2009;18(1):30.
Khodyakov D, Sharif MZ, Dixon EL, Mendel P, Chung B, Linkski B, Jones JB. An implementation evaluation of the community engagement and planning intervention in the CPIC depression care improvement trial. Community Ment Health J. 2014;50(3):312–24.
Murnaghan D, Laurence C, Munro-Bernard M. (2013). Engaging student voices in discussions on youth health knowledge exchange. In CU Expo: University of Prince Edward Island. https://epress.lib.uts.edu.au/journals/index.php/ijcre/article/view/3400/4695.
Kothari A, Wathen CN. A critical second look at integrated knowledge translation. Health Policy. 2013;109(2):187–91.
Gagliardi AR, Kothari A, Graham ID. Research agenda for integrated knowledge translation (IKT) in healthcare: what we know and do not yet know. J Epidemiol Community Health. 2017;71(2):105–6.
Gagliardi AR, Berta W, Kothari A, Boyko J, Urquhart R. Integrated knowledge translation (IKT) in health care: a scoping review. Implement Sci. 2015;11(1):38.
Zwarenstein M, Reeves S. Knowledge translation and interprofessional collaboration: where the rubber of evidence-based care hits the road of teamwork. J Contin Educ Health Prof. 2006;26(1):46–54.
Banner D, Janke F, King-Shier K. The importance of collaborative partnerships: making evidence base practice happen in real world contexts. In: Lipscomb M, editor. Exploring evidence-based practice: debates and challenges in nursing. Abingdon: Routledge; 2016. p. 11–28.
McLean RK, Graham ID, Bosompra K, Choudhry Y, Coen SE, MacLeod M, Tetroe JM. Understanding the performance and impact of public knowledge translation funding interventions: protocol for an evaluation of Canadian Institutes of Health Research knowledge translation funding programs. Implement Sci. 2012;7(1):57.
Harrison MB, Graham ID, Lorimer K, Friedberg E, Pierscianowski T, Brandys T. Leg-ulcer care in the community, before and after implementation of an evidence-based service. Can Med Assoc J. 2005;172(11):1447–52.
Gagliardi AR, Dobrow MJ. Identifying the conditions needed for integrated knowledge translation (IKT) in health care organizations: qualitative interviews with researchers and research users. BMC Health Serv Res. 2016;16(1):256.
Cooke J, Langley J, Wolstenholme D, Hampshaw S. Seeing" the difference: the importance of visibility and action as a mark of" authenticity" in co-production: comment on" collaboration and co-production of knowledge in healthcare: opportunities and challenges. Int J Health Policy Manag. 2017;6(6):345.
Greenhalgh T, Jackson C, Shaw S, Janamian T. Achieving research impact through co-creation in community-based health services: literature review and case study. Milbank Q. 2016;94(2):392–429.
Barbot J. How to build an “active” patient? The work of AIDS associations in France. Soc Sci Med. 2006;62(3):538–51.
de Wit MPT, Kvien TK, Gossec L. Patient participation as an integral part of patient-reported outcomes development ensures the representation of the patient voice: a case study from the field of rheumatology. RMD Open. 2015;1(1):000129.
Kielmann K, Cataldo F. Tracking the rise of the “expert patient” in evolving paradigms of HIV care. AIDS Care. 2010;22(Suppl 1):21–8.
Kirwan JR, Newman S, Tugwell PS, Wells GA, Hewlett S, Idzera L, Nicklin J. Progress on incorporating the patient perspective in outcome assessment in rheumatology and the emergence of life impact measures at OMERACT 9. J Rheumatol. 2009;36(9):2071–6.
Stamm TA, Nell V, Mathis M, Coenen M, Aletaha D, Cieza A, Machold KP. Concepts important to patients with psoriatic arthritis are not adequately covered by standard measures of functioning. Arthritis Care Res. 2007;57(3):487–94.
Cutolo M, Kitas GD, van Riel PL. Burden of disease in treated rheumatoid arthritis patients: going beyond the joint. Semin Arthritis Rheum. 2014;43(4):479–88.
Gossec L, Paternotte S, Aanerud GJ, Balanescu A, Boumpas DT, Carmona L, Gogus F. Finalisation and validation of the rheumatoid arthritis impact of disease score, a patient-derived composite measure of impact of rheumatoid arthritis: a EULAR initiative. Ann Rheum Dis. 2011;70(6):935–42.
Kirwan JR, Ahlmén M, de Wit M, Heiberg T, Hehir M, Hewlett S, Richards P. Progress since OMERACT 6 on including patient perspective in rheumatoid arthritis outcome assessment. J Rheumatol. 2005;32(11):2246–9.
Ennis L, Wykes T. Impact of patient involvement in mental health research: longitudinal study. Br J Psychiatry. 2013;203(5):381–6.
Merkel PA, Manion M, Gopal-Srivastava R, Groft S, Jinnah HA, Robertson D, Krischer JP. The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network. Orphanet J Rare Dis. 2016;11(1):66.
Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R. A systematic review of the impact of patient and public involvement on service users, researchers and communities. The Patient-Patient-Centered Outcomes Research 2014;7(4):387–395.
Abelson J, Forest PG, Eyles J, Casebeer A, Mackean G, Effective public consultation project team. Will it make a difference if I show up and share? A citizens' perspective on improving public involvement processes for health system decision-making. J Health Serv Res Policy. 2004;9(4):205–12.
Greene J, Hibbard JH. Why does patient activation matter? An examination of the relationships between patient activation and health-related outcomes. J Gen Intern Med. 2012;27(5):520–6.
Shippee ND, Domecq Garces JP, Prutsky Lopez GJ, Wang Z, Elraiyah TA, Nabhan M, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin PJ. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect. 2015;18(5):1151–66.
Bagley HJ, Short H, Harman NL, Hickey HR, Gamble CL, Woolfall K, Williamson PR. A patient and public involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials–a work in progress. Res Involvement Engagement. 2016;2(1):15.
Concannon TW, Meissner P, Grunbaum JA, McElwee N, Guise JM, Santa J, Leslie LK. A new taxonomy for stakeholder engagement in patient-centered outcomes research. J Gen Intern Med. 2012;27(8):985–91.
Arnstein SR. A ladder of citizen participation. J Am Inst Plann. 1969;35(4):216–24.
Rowe G, Frewer LJ. A typology of public engagement mechanisms. Sci Technol Human Values. 2005;30(2):251–90.
Forbat L, Hubbard G, Kearney N. Patient and public involvement: models and muddles. J Clin Nurs. 2009;18(18):2547–54.
International Association for Public Participation. IAP2 Spectrum. http://iap2canada.ca/Resources/Documents/0702-Foundations-Spectrum-MW-rev2%20(1).pdf. Accessed 10 Jan 2019.
Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, Sweeney J. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff. 2013;32(2):223–31.
Karazivan P, Dumez V, Flora L, Pomey MP, Del Grande C, Ghadiri DP, et al. The patient-as-partner approach in health care: A conceptual framework for a necessary transition. Acad Med. 2015;90(4):437–41.
Johnson DS, Bush MT, Brandzel S, Wernli KJ. The patient voice in research—evolution of a role. Res Involvement Engagement. 2016;2(1):6.
Staniszewska S, Adebajo A, Barber R, Beresford P, Brady LM, Brett J, et al. Developing the evidence base of patient and public involvement in health and social care research: The case for measuring impact. Int J Consum Stud. 2011;35(6):628–32.
Barber R, Beresford P, Boote J, Cooper C, Faulkner A. Evaluating the impact of service user involvement on research: a prospective case study. Int J Consum Stud. 2011;35(6):609–15.
Ocloo J, Matthews R. From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Qual Saf. 2016;25(8):626–32.
Barello S, Graffigna G, Vegni E. Patient engagement as an emerging challenge for healthcare services: mapping the literature. Nursing Res Practice. 2012; https://doi.org/10.1155/2012/905934.
Crocker JC, Boylan AM, Bostock J, Locock L. Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study. Health Expect. 2017;20(3):519–28.
Boivin A, Richards T, Forsythe L, Grégoire A, L’Espérance A, Abelson J, Carman KL. Evaluating patient and public involvement in research. Br Med J. 2018;363:k5147.
Lough S. Need to define patient engagement in research. CMAJ. 2015;18(12):E385–6.
Gallivan J, Kovacs Burns K, Bellows M, Eigenseher C. The many faces of patient engagement. J Participatory Med. 2012;4:e32.
Wallerstein N. Commentary: challenges for the field in overcoming disparities through a CBPR approach. Ethn Dis. 2006;16(1):S1.
Carroll SL, Embuldeniya G, Abelson J, McGillion M, Berkesse A, Healey JS. Questioning patient engagement: research scientists’ perceptions of the challenges of patient engagement in a cardiovascular research network. Patient Pref Adherence. 2017;11:1573.
Minogue V, Girdlestone J. Building capacity for service user and carer involvement in research: the implications and impact of best research for best health. Int J Health Care Qual Assur. 2010;23(4):422–35.
Bombak AE, Hanson HM. A critical discussion of patient engagement in research. Journal of Patient-Centered Research and Reviews. 2017;4(1):39–41.
Shimmin C, Wittmeier KD, Lavoie JG, Wicklund ED, Sibley KM. Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis. BMC Health Serv Res. 2017;17(1):539.
Manafo E, Petermann L, Mason-Lai P, Vandall-Walker V. Patient engagement in Canada: a scoping review of the ‘how’ and ‘what’ of patient engagement in health research. Health Res Policy Syst. 2018;16(1):5.
Reimer-Kirkham S, Varcoe C, Browne AJ, Lynam MJ, Khan KB, McDonald H. Critical inquiry and knowledge translation: exploring compatibilities and tensions. Nurs Philos. 2009;10(3):152–66.
Holmes BJ, Best A, Davies H, Hunter D, Kelly MP, Marshall M, Rycroft-Malone J. Mobilising knowledge in complex health systems: a call to action. Evidence Policy. 2017;13(3):539–60.
Thompson J, Barber R, Ward PR, Boote JD, Cooper CL, Armitage CJ, Jones G. Health researchers’ attitudes towards public involvement in health research. Health Expect. 2009;12(2):209–20.
Van Olphen J, Eliason MJ, Freudenberg N, Barnes M. Nowhere to go: How stigma limits the options of female drug users after release from jail. Subst Abuse Treat Prev Policy. 2009;4(1):10.
Rolfe DE, Ramsden VR, Banner D, Graham ID. Using qualitative Health Research methods to improve patient and public involvement and engagement in research. Res Involvement Engagement. 2018;4(1):49.
Bartlett SJ, Barnes T, McIvor RA. Integrating patients into meaningful real-world research. Ann Am Thorac Soc. 2014;11(Suppl 2):S112–7.
Levitan B, Getz KA, Eisenstein EL, Goldberg M, Harker M, Hesterlee SE, et al. Assessing the financial value of patient engagement. Value in Health. 2017;20(5):A33.
South A, Hanley B, Gafos M, Cromarty B, Stephens R, Sturgeon K, et al. Models and impact of patient and public involvement in studies carried out by the Medical Research Council Clinical Trials Unit at University College London: Findings from ten case studies. Trials. 2016;17(1):376.
Forsythe LP, Ellis LE, Edmundson L, Sabharwal R, Rein A, Konopka K, Frank L. Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learned. J Gen Intern Med. 2016;31(1):13–21.
Conklin A, Morris Z, Nolte E. What is the evidence base for public involvement in health-care policy? Results of a systematic scoping review. Health Expect. 2015;18(2):153–65.
Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health. 1998;19(1):173–202.
Fleming MD, Shim JK, Yen IH, Thompson-Lastad A, Rubin S, Van Natta M, Burke NJ. Patient engagement at the margins: health care providers' assessments of engagement and the structural determinants of health in the safety-net. Soc Sci Med. 2017;183:11–8.
Muhammad M, Wallerstein N, Sussman AL, Avila M, Belone L, Duran B. Reflections on researcher identity and power: the impact of positionality on community based participatory research (CBPR) processes and outcomes. Crit Sociol. 2015;41(7–8):1045–63.
Abelson J. Patient engagement in health technology assessment: what constitutes ‘meaningful’ and how we might get there. J Health Serv Res Policy. 2018;23(2):69–71.
Kauffman KS, Dosreis S, Ross M, Barnet B, Onukwugha E, Mullins CD. Engaging hard-to-reach patients in patient-centered outcomes research. J Comp Eff Res. 2013;2(3):313–24.
Marlett N, Shklarov S, Marshall D, Santana MJ, Wasylak T. Building new roles and relationships in research: a model of patient engagement research. Qual Life Res. 2015;24(5):1057–67.
Entwistle VA, Renfrew MJ, Yearley S, Forrester J, Lamont T. Lay perspectives: advantages for health research. BMJ. 1998;316(7129):463.
Snape D, Kirkham J, Britten N, Froggatt K, Gradinger F, Lobban F, Jacoby A. Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study. BMJ Open. 2014;4(6):e004943.
Hearld KR, Hearld LR, Hall AG. Engaging patients as partners in research: factors associated with awareness, interest, and engagement as research partners. SAGE Open Medicine. 2017;5:2050312116686709.
Evans D, Coad J, Cottrell K, Dalrymple J, Davies R, Donald C, Pollard K. Public involvement in research: Assessing impact through a realist evaluation. 2014. https://doi.org/10.3310/hsdr02360.
Margaret L, Hayward B, Hayward P, Walsh C. Increasing patient engagement in healthcare service design: a qualitative evaluation of a co-design programme in New Zealand. Patient Experience Journal. 2017;4(1):23–32.
Kirwan JR, de Wit M, Frank L, Haywood KL, Salek S, Brace-McDonnell S, et al. Emerging guidelines for patient engagement in research. Value Health. 2017, 20(Suppl 3):481–6.
Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, et al. GRIPP2 reporting checklists: Tools to improve reporting of patient and public involvement in research. Res Involv Engagem. 2017;3(1):13.
Barber R, Boote JD, Parry GD, Cooper CL, Yeeles P, Cook S. Can the impact of public involvement on research be evaluated? A mixed methods study. Health Expect. 2012;15(3):229–41.
Haywood K, Brett J, Salek S, Marlett N, Penman C, Shklarov S, et al. Patient and public engagement in health-related quality of life and patient-reported outcomes research: What is important and why should we care? Findings from the first ISOQOL patient engagement symposium. Qual Life Res. 2015;24(5):1069–76.
Boote J, Telford R, Cooper C. Consumer involvement in health research: a review and research agenda. Health Policy. 2002;61(2):213–36.
Oliver SR, Rees RW, Clarke-Jones L, Milne R, Oakley AR, Gabbay J, et al. A multidimensional conceptual framework for analysing public involvement in health services research. Health Expect. 2008;11(1):72–84.
Hamilton CB, Hoens AM, Backman CL, McKinnon AM, McQuitty S, English K, Li LC. An empirically based conceptual framework for fostering meaningful patient engagement in research. Health Expect. 2018;21(1):396–406.
Centre of Excellence on Partnerships with Patients and the Public. Patient and public engagement evaluation toolkit. https://ceppp.ca/en/our-projects/evaluation-toolkit/#care. Accessed 01 December 2018.
Curran GM, Bauer M, Mittman B, Pyne JM, Stetler C. Effectiveness-implementation hybrid designs: combining elements of clinical effectiveness and implementation research to enhance public health impact. Med Care. 2012;50(3):217.
Pawson R. Evidence-based policy: a realist perspective. London: Sage; 2006.