Swartwout E, Drenkard K, McGuinn K, Grant S, El-Zein A. Patient and family engagement summit: needed changes in clinical practice. J. Nurs. Adm. 2016;46(3 Suppl):S11–8.
Shen S, Doyle-Thomas KA, Beesley L, Karmali A, Williams L, Tanel N, et al. How and why should we engage parents as co-researchers in health research? A scoping review of current practices. Health Expect. 2016.
Esmail L, Moore E, Rein A. Evaluating patient and stakeholder engagement in research: moving from theory to practice. J Comp Eff Res. 2015;4(2):133–45.
Frank L, Forsythe L, Ellis L, Schrandt S, Sheridan S, Gerson J, et al. Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute. Qual Life Res. 2015;24(5):1033–41.
Pandya-Wood R, Barron DS, Elliott J. A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards. Research Involvement and Engagement. 2017;3:1.
National Institute for Health Research. INVOLVE. Available from: http://www.invo.org.uk/. [Retrieved September 5, 2018].
Patient-Centered Outcome Research Institute. Available from: https://www.pcori.org/. [Retrieved September 5, 2018].
Canadian Institutes of Health Research. Strategy for Patient-Oriented Research (SPOR) [Available from: http://www.cihr-irsc.gc.ca/e/41204.html. Accessed 5 Sept 2018.
Canadian Institutes of Health Research. Strategy for Patient-Oriented Health Research: Patient Engagement Framework. 2014 [Available from: http://www.cihr-irsc.gc.ca/e/48413.html. Accessed 5 Sept 2018.
Alberta Innovates Alberta SPOR SUUPPORT Unit. [Available from: http://www.aihealthsolutions.ca/initiatives-partnerships/spor/. Accessed 5 Sept 2018.
James Lind Alliance. Priority Setting Partnerships [Available from: http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/about-psps.htm. Accessed 5 Sept 2018.
Lophatananon A, Tyndale-Biscoe S, Malcolm E, Rippon HJ, Holmes K, Firkins LA, et al. The James Lind Alliance approach to priority setting for prostate cancer research: an integrative methodology based on patient and clinician participation. BJU Int. 2011;108(7):1040–3. pmid: 21914107.
Madden M, Morley R. Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership. Research Involvement and Engagement. 2016;2:1.
Knight SR, Metcalfe L, O'Donoghue K, Ball ST, Beale A, Beale W, et al. Defining priorities for future research: results of the UK kidney transplant priority setting partnership. PLoS One. 2016;11(10):e0162136.
Jones JM, Bhatt J, Avery J, Laupacis A, Cowan K, Basappa NS, et al. Setting Research Priorities for Kidney Cancer. Eur Urol. 2017;72(6):861-4.
Manns B, Hemmelgarn B, Lillie E, Dip SC, Cyr A, Gladish M, et al. Setting research priorities for patients on or nearing dialysis. Clin J Am Soc Nephrol. 2014;9(10):1813–21.
Kelly S, Lafortune L, Hart N, Cowan K, Fenton M, Brayne C, et al. Dementia priority setting partnership with the James Lind alliance: using patient and public involvement and the evidence base to inform the research agenda. Age Ageing. 2015;44(6):985–93.
Rees SE, Chadha R, Donovan LE, Guitard AL, Koppula S, Laupacis A, et al. Engaging patients and clinicians in establishing research priorities for gestational diabetes mellitus. Can J Diabetes. 2017;41(2):156–63.
Tallon D, Chard J, Dieppe P. Relation between agendas of the research community and the research consumer. The Lancet. 2000;355(9220):2037–40.
Patten SB. Problems from the past and prevention for the future. Can J Psychiatry. 2015;60(1):4–5.
Canada MHCo. Making the case for investing in mental health in Canada.; 2013.
Canada MHCo. Strengthening the case for investing in Canada’s mental health system: economic considerations. 2017.
Manafo E, Petermann L, Vandall-Walker V, Mason-Lai P. Patient and public engagement in priority setting: a systematic rapid review of the literature. PLoS One. 2018;13(3):e0193579.
D'Andreamatteo C, et al. Defining Research Priorities for Nutrition and Mental Health: Insights from Dietetics Practice. Can J Diet Pract Res. 2016;77(1):55–6.
Canadian Institutes of Health Research. Identifying the Knowledge-to-Action Gaps 2011 [Available from: http://www.cihr-irsc.gc.ca/e/43275.html. Accessed 5 Sept 2018.
Graham ID, Logan J, Harrison MB, Straus SE, Tetroe J, Caswell W, et al. Lost in knowledge translation: time for a map? J Contin Educ Heal Prof. 2006;26(1):13–24.
Caron-Flinterman JF, Broerse JEW, Bunders JFG. Patient Partnership in Decision-Making on biomedical research:changing the network. Sci Technol Hum Values. 2007;32(3):339–68.
Sibbald SL, Singer PA, Upshur R, Martin DK. Priority setting: what constitutes success? A conceptual framework for successful priority setting. BMC Health Serv Res. 2009;9:43.
Mador RL, Kornas K, Simard A, Haroun V. Using the Nine Common Themes of Good Practice checklist as a tool for evaluating the research priority setting process of a provincial research and program evaluation program. Health Research Policy and Systems. 2016;14:22. https://doi.org/10.1186/s12961-016-0092-5.
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. BMJ (Clinical research ed). 2017;358:j3453.
INVOLVE. Exploring impact: public involvement in NHS, public health and social care research. National Institute of Health; 2009.
Breault LRK, Hartle, K, Babins-Wagner, R, de Beaudrap C, Jesaui Y et al. Research study on priority setting in depression: 25 research questions asked by people with lived depression experience in Alberta. CMAJ Open. 2018;[Submitted - In process].
James Lind Alliance. Depression Top 10. [Available from: http://www.jla.nihr.ac.uk/priority-setting-partnerships/depression/top-10-priorities/. Accessed 5 Sept 2018.
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 research policy and systems. 2018;16(1):5.
Ellis LE, Kass NE. How are PCORI-funded researchers engaging patients in research and what are the ethical implications? AJOB Empirical Bioethics. 2017;8(1):1–10.
Amirav Iea. Patient-Researcher Engagement in Health Research - A Parent's Perspective. Pediatrics 2017;In press.
Institute of Patient- and Family- Centered Care. Advancing the practice of patient- and family-centered care in hospitals. Bethesda, MD; 2017. Available from: http://www.ipfcc.org/resources/getting_started.pdf. Accessed 5 Sept 2018.
Duffett L. Patient engagement: what partnering with patient in research is all about. Thromb Res. 2017;150:113–20.
Staniszewska S, Brett J, Mockford C, Barber R. The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. Int J Technol Assess Health Care. 2011;27(4):391–9.
Abelson J, Li K, Wilson G, Shields K, Schneider C, Boesveld S. Supporting quality public and patient engagement in health system organizations: development and usability testing of the public and patient engagement evaluation tool. Health Expect. 2016;19(4):817–27.
Forsythe LP, Ellis LE, Edmundson L, Sabharwal R, Rein A, Konopka K, et al. Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learned. J Gen Intern Med. 2016;31(1):13–21.
Pollard K, Donskoy AL, Moule P, Donald C, Lima M, Rice C. Developing and evaluating guidelines for patient and public involvement (PPI) in research. Int J Health Care Qual Assur. 2015;28(2):141–55.
Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health affairs (Project Hope). 2013;32(2):207–14.
McMaster University. Supporting quality engagement in the Canadian health system: The Public and Patient Engagement Evaluation Tool (PPEET) Project n.d. [Available from: https://fhs.mcmaster.ca/publicandpatientengagement/ppeet.html. Accessed 5 Sept 2018.
LTD CLA. Depressio priority setting formative evaluation. Final Report. 2017.
Evans D, Coad J, Cottrell K, Dalrymple J, Davies R, Donald C, et al. Health Services and Delivery Research. Public involvement in research: assessing impact through a realist evaluation. Southampton (UK): NIHR Journals Library Copyright (c) Queen's Printer and Controller of HMSO 2014. This work was produced by Evans et al. under the terms of a commissioning contract issued by the secretary of state for health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR journals library, National Institute for Health Research, evaluation, trials and studies coordinating Centre, alpha house, University of Southampton Science Park, Southampton SO16 7NS, UK.; 2014.
Morrow E, Ross F, Grocott P, Bennett J. A model and measure for quality service user involvement in health research. Int J Consum Stud. 2010;34(5):532–9.
Wilson P, Mathie E, Keenan J, McNeilly E, Goodman C, Howe A, et al. Health Services and Delivery Research. ReseArch with Patient and Public invOlvement: a RealisT evaluation - the RAPPORT study. Southampton (UK): NIHR Journals Library Copyright (c) Queen's Printer and Controller of HMSO 2015. This work was produced by Wilson et al. under the terms of a commissioning contract issued by the secretary of state for health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR journals library, National Institute for Health Research, evaluation, trials and studies coordinating Centre, alpha house, University of Southampton Science Park, Southampton SO16 7NS, UK.; 2015.
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.
Ward PR, Thompson J, Barber R, Armitage CJ, Boote JD, Cooper CL, et al. Critical perspectives on ‘consumer involvement’ in health research. J Sociol. 2010;46(1):63–82.
Hewlett S, Wit M, Richards P, Quest E, Hughes R, Heiberg T, et al. Patients and professionals as research partners: challenges, practicalities, and benefits. Arthritis Rheum. 2006;55(4):676–80.
Abma TA, Broerse JE. Patient participation as dialogue: setting research agendas. Health Expect. 2010;13(2):160–73.
van Merode T, Bours S, van Steenkiste B, Sijbers T, van der Hoek G, Vos C, et al. Describing patients' needs in the context of research priorities in patients with multiple myeloma or Waldenstrom's disease: a truly patient-driven study. Z Evid Fortbild Qual Gesundhwes. 2016;112:11–8.
Pittens CACM, Elberse JE, Visse M, Abma TA, Broerse JEW. Research agendas involving patients: factors that facilitate or impede translation of patients' perspectives in programming and implementation. Sci Public Policy. 2014;41(6):809–20.
Mason-Lai P, Vandall-Walker, V. Patient engagement in health research: Engagement competencies, strengths and readiness tools, course content. 2016.
Barello S, Graffigna G, Pitacco G, Mislej M, Cortale M, Provenzi L. An Educational Intervention to Train Professional Nurses in Promoting Patient Engagement: A Pilot Feasibility Study. Frontiers in Psychology. 2016;7:2020. https://doi.org/10.3389/fpsyg.2016.02020.
Tzeng H-M, Marcus PJ. Measuring patient engagement: which healthcare engagement behaviours are important to patients? J Adv Nurs. 2017;73(7):1604–9.
Bigi S. Communication Skills for Patient Engagement: Argumentation Competencies As Means to Prevent or Limit Reactance Arousal, with an Example from the Italian Healthcare System. Frontiers in Psychology. 2016;7:1472.
Walton MK. Patient-centered care and the Mediator's skills. The Journal of clinical ethics. 2015;26(4):333–5.
Blumenthal-Barby JS. 'That's the doctor's job': overcoming patient reluctance to be involved in medical decision making. Patient Educ Couns. 2017;100(1):14–7.
Domecq JPPG, Elraiyah T, et al. Patient engagement in research: a systematic review. BMC Health Services Research. 2014;14:89.
Foundation C. Should money come into it? A tool for deciding whether to pay patient-engagement participants. Ontario, Canada: Change Foundation.
Boivin A, Lehoux P, Lacombe R, Burgers J, Grol R. Involving patients in setting priorities for healthcare improvement: a cluster randomized trial. Implementation science : IS. 2014;9:24.
<D'andreamatteo et al 2016.pdf>.
Etchegary H, Bishop L, Street C, Aubrey-Bassler K, Humphries D, Vat LE, et al. Engaging patients in health research: identifying research priorities through community town halls. BMC Health Serv Res. 2017;17(1):192.
Flaman LM, Nykiforuk CI, Plotnikoff RC, Raine K. Exploring facilitators and barriers to individual and organizational level capacity building: outcomes of participation in a community priority setting workshop. Glob Health Promot. 2010;17(2):34–43.
Regier DA, Bentley C, Mitton C, Bryan S, Burgess MM, Chesney E, et al. Public engagement in priority-setting: results from a pan-Canadian survey of decision-makers in cancer control. Soc Sci Med. 2014;122:130–9.
Restall GJ, Carnochan TN, Roger KS, Sullivan TM, Etcheverry EJ, Roddy P. Collaborative priority setting for human immunodeficiency virus rehabilitation research: a case report. Can J Occup Ther. 2016;83(1):7–13.
Walton NA, Martin DK, Peter EH, Pringle DM, Singer PA. Priority setting and cardiac surgery: a qualitative case study. Health Policy. 2007;80(3):444–58.