Whose perspective is it anyway? Dilemmas of patient involvement in the development of a randomized clinical trial – a qualitative study

References

• Brett J, Staniszewska S, Mockford C, et al. A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient. 2014;7:387–395.
   PubMedGoogle Scholar
• INVOLVE. What is public involvement in research? [cited 2017]. Available from: http://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/
   Google Scholar
• Dudley L, Gamble C, Preston J, et al. What difference does patient and public involvement make and what are its pathways to impact? Qualitative study of patients and researchers from a cohort of randomised clinical trials. PLoS One. 2015;10:e0128817.
   PubMed Web of Science ®Google Scholar
• Delbanco T, Berwick DM, Boufford JI, et al. Healthcare in a land called PeoplePower: nothing about me without me. Health Expect. 2001;4:144–150.
   PubMedGoogle Scholar
• Gibson A, Britten N, Lynch J. Theoretical directions for an emancipatory concept of patient and public involvement. Health (London). 2012;16:531–547.
   PubMed Web of Science ®Google Scholar
• Armstrong N, Herbert G, Aveling E-L, et al. Optimizing patient involvement in quality improvement. Health Expect. 2013;16:e36–e47.
   PubMed Web of Science ®Google Scholar
• Brett J, Staniszewska S, Mockford C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17:637–650.
   PubMed Web of Science ®Google Scholar
• Thompson J, Bissell P, Cooper C, et al. Credibility and the ‘professionalized’ lay expert: reflections on the dilemmas and opportunities of public involvement in health research. Health (London). 2012;16:602–618.
   PubMed Web of Science ®Google Scholar
• Martin GP. 'Ordinary people only': knowledge, representativeness, and the publics of public participation in healthcare. Sociol Health Illn. 2008;30:35–54.
   PubMed Web of Science ®Google Scholar
• Gooberman-Hill R, Burston A, Clark E, et al. Involving patients in research: considering good practice. Musculoskelet Care. 2013;11:187–190.
   PubMedGoogle Scholar
• Ennis L, Wykes T. Impact of patient involvement in mental health research: longitudinal study. Br J Psychiatry. 2013;203:381–386.
   PubMed Web of Science ®Google Scholar
• Staley K, Buckland SA, Hayes H, et al. ‘The missing links’: understanding how context and mechanism influence the impact of public involvement in research. Health Expect. 2014;17:755–764.
   PubMed Web of Science ®Google Scholar
• Evans BA, Bedson E, Bell P, et al. Involving service users in trials: developing a standard operating procedure. Trials. 2013;14:219.
   PubMed Web of Science ®Google Scholar
• Bagley HJ, Short H, Harman NL, et al. A patient and public involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials – a work in progress. Res Involve Engage. 2016;2:15.
   PubMedGoogle Scholar
• Staniszewska S, Brett J, Mockford C, et al. The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. Int J Technol Assess Health Care. 2011;27:391–399.
   PubMed Web of Science ®Google Scholar
• Staniszewska S, Brett J, Simera I, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ. 2017;358:j3453.
   PubMed Web of Science ®Google Scholar
• INVOLVE. Briefing notes for researchers: public involvement in NHS, public health and social care research. Eastleigh: INVOLVE; 2012.
   Google Scholar
• NIHR. Involving users in the research process: a ‘how to’ guide for researchers. London: Biomedical Research Center; 2010.
   Google Scholar
• Goodare H. Cost is a barrier to patient involvement. BMJ. 2016;355.
   Google Scholar
• Buck D, Gamble C, Dudley L, et al. From plans to actions in patient and public involvement: qualitative study of documented plans and the accounts of researchers and patients sampled from a cohort of clinical trials. BMJ Open. 2014;4:e006400.
   PubMed Web of Science ®Google Scholar
• INVOLVE. Diversity and inclusion: What’s it about and why is it important for public involvement in research? Eastleigh: INVOLVE; 2012. (1 September 2017).
   Google Scholar
• ClinicalTrials.gov. MyHealth: Follow-up After Breast Cancer Treatment (MyHealth) 2016. Available from: https://clinicaltrials.gov/ct2/show/NCT02949167
   Google Scholar
• Gibson A, Welsman J, Britten N. Evaluating patient and public involvement in health research: from theoretical model to practical workshop. Health Expect. 2017;20:826–835.
   PubMed Web of Science ®Google Scholar
• Arnstein SR. A ladder of citizen participation. J Am Inst Plann. 1969;35:216–224.
   Web of Science ®Google Scholar
• Habermas J. The theory of communicative action (Volume 2: Life world and System). Cambridge: Polity Press; 1987.
   Google Scholar
• Bourdieu P. The logic of practice. Cambridge: Polity Press; 1990.
   Google Scholar
• Fraser N. Rethinking the public sphere: a contribution to the critique of actually existing democracy. In: Fraser N, editor. Justice interruptus: critical reflections on the 'Postsocialist' condition. London: Routledge; 1997. p. 69–98.
   Google Scholar
• Flick U. An introduction to qualitative research. 5th ed. London: Sage Publication; 2014.
   Google Scholar
• Saltbaek L, Karlsen RV, Bidstrup PE, et al. MyHealth: specialist nurse-led follow-up in breast cancer. A randomized controlled trial – Development and feasibility. Acta Oncol in press
   Web of Science ®Google Scholar
• Davidson PM, Halcomb EJ, Gholizadeh L. Focus groups in health research. In: Liamputtong P, editor. Research methods in health: foundations for evidence-based practice. Melbourne, Victoria: Oxford University Press; 2013. p. 54–72.
   Google Scholar
• Gregorio JD, Lee JW. Education and income inequality: new evidence from cross-country data. Rev Income Wealth. 2002;48:395–416.
   Google Scholar
• van der Heide I, Wang J, Droomers M, et al. The relationship between health, education, and health literacy: results from the Dutch adult literacy and life skills survey. J Health Comm. 2013;18:172–184.
   PubMed Web of Science ®Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.
   Google Scholar
• International Q. NVivo 11 for Windows. Australia: QSR International; 2015.
   Google Scholar
• Popay JaC, M (editors) with the PiiAF Study Group The Public Involvement Impact Assessment Framework Guidance. Universities of Lancaster, Liverpool and Exeter.; 2014.
   Google Scholar
• Guyatt GH, Sackett DL, Sinclair JC, et al. Users' guides to the medical literature: IX. A method for grading health care recommendations. JAMA. 1995;274:1800–1804.
   PubMed Web of Science ®Google Scholar
• Hahn DL, Hoffmann AE, Felzien M, et al. Tokenism in patient engagement. Fam Pract. 2017;34:290–295.
   PubMed Web of Science ®Google Scholar
• Greenhalgh T, Annandale E, Ashcroft R, et al. An open letter to The BMJ editors on qualitative research. BMJ. 2016;352:i563.
   PubMed Web of Science ®Google Scholar
• Pols J. Enacting appreciations: beyond the patient perspective. Health Care Anal. 2005;13:203–221.
   PubMed Web of Science ®Google Scholar
• Coulter A. Measuring what matters to patients. BMJ. 2017;356:j816.
   PubMed Web of Science ®Google Scholar
• Johannesen J. “The trouble with patient and public involvement (PPI)” – keynote at Cochrane Colloquium 2018 2018. Available from: https://johannesen.ca/2018/09/the-trouble-with-patient-and-public-involvement-ppi-keynote-at-cochrane-colloquium-2018/
   Google Scholar
• South A, Hanley B, Gafos M, 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;17:376.
   PubMed Web of Science ®Google Scholar
• Stocks SJ, Giles SJ, Cheraghi-Sohi S, et al. Application of a tool for the evaluation of public and patient involvement in research. BMJ Open. 2015;5:e006390.
   PubMed Web of Science ®Google Scholar
• Howe A, Mathie E, Munday D, et al. Learning to work together – lessons from a reflective analysis of a research project on public involvement. Res Involvement Engagement. 2017;3:1.
   PubMedGoogle Scholar