1.
Heggenhougen K, Quah SR. International encyclopedia of public health [Internet]. Amsterdam: Elsevier/Academic Press; 2008. Available from: http://www.sciencedirect.com/science/referenceworks/9780123739605
2.
Oliver S. Public and Consumer Participation in Policy and Research. International Encyclopedia of Public Health [Internet]. Elsevier; 2008. p. 408–415. Available from: http://www.sciencedirect.com/science/referenceworks/9780123739605
3.
Burawoy M. Public Sociologies: Contradictions, Dilemmas, and Possibilities. Social Forces. 2004 June 1;82(4):1603–1618.
4.
Rifkin SB, Pridmore P, Teaching Aids at Low Cost. Partners in planning: information, participation and empowerment. London: Macmillan; 2001.
5.
Warren J, Garthwaite K. Whose side are we on and for whom do we write? Notes on issues and challenges facing those researching and evaluating public policy. Evidence & Policy: A Journal of Research, Debate and Practice. 2015 May 22;11(2):225–237.
6.
Jan Wallcraft and Mary Nettle. Chapter 1: History, context and language. Handbook of service user involvement in mental health research [Internet]. Chichester, UK: Wiley-Blackwell; 2009. Available from: http://dx.doi.org/10.1002/9780470743157
7.
Moore K. Powered by the People: Scientific Authority in Participatory Science. The New Political Sociology of Science: Institutions, Networks, and Power [Internet]. Madison, WI: University of Wisconsin Press; 2015. p. 299–323. Available from: https://contentstore.cla.co.uk/secure/link?id=4d5b1072-890a-e811-80cd-005056af4099
8.
Nowotny H, Scott P, Gibbons M. Introduction: `Mode 2’ Revisited: The New Production of Knowledge. Minerva. 2003;41(3):179–194.
9.
Beresford P. User involvement, research and health inequalities: developing new directions. Health & Social Care in the Community. 2007 Feb 19;15(4):306–312.
10.
Arnstein SR. A Ladder Of Citizen Participation. Journal of the American Institute of Planners. 1969 July;35(4):216–224.
11.
Collins K, Ison R. Dare we jump off Arnstein’s ladder? Social learning as a new policy paradigm [Internet]. Proceedings of PATH (Participatory Approaches in Science Technology) Conference, 4-7 June 2006, Edinburgh; Available from: http://oro.open.ac.uk/8589/
12.
Pawson, R., Boaz, A., Grayson, L., Long, A. & Barnes, C. Types and quality of knowledge in social care [Internet]. Social Care Institute for Excellence; 2003. Available from: https://www.scie-socialcareonline.org.uk/types-and-quality-of-knowledge-in-social-care/r/a11G00000017vBqIAI
13.
Cornwall A. Towards participatory practice: Participatory rural appraisal (PAR) and the participatory process. Participatory research in health: issues and experiences. London: Zed; 1996. p. 94–107.
14.
Hart RA, UNICEF. International Child Development Centre. Children’s participation: from tokenism to citizenship. Florence: UNICEF International Child Development Centre; 1992.
15.
Nind M. What is inclusive research? [Internet]. London: Bloomsbury; 2014. Available from: https://www.bloomsburycollections.com/book/what-is-inclusive-research/
16.
Frickel S, Gibbon S, Howard J, Kempner J, Ottinger G, Hess DJ. Undone Science: Charting Social Movement and Civil Society Challenges to Research Agenda Setting. Science, Technology, & Human Values. 2010 July;35(4):444–473.
17.
Martin GP. ‘Ordinary people only’: knowledge, representativeness, and the publics of public participation in healthcare. Sociology of Health & Illness. 2008 Jan;30(1):35–54.
18.
Rickinson M, Sebba J, Edwards A. Ways of thinking about user engagement. Improving research through user engagement [Internet]. Abingdon: Routledge; 2011. Available from: https://contentstore.cla.co.uk/secure/link?id=22b2337c-3700-e811-80cd-005056af4099
19.
Stewart R, Liabo K. Involvement in research without compromising research quality. Journal of Health Services Research & Policy. 2012 Oct;17(4):248–251.
20.
Rowe G, Frewer LJ. A Typology of Public Engagement Mechanisms. Science, Technology, & Human Values. 2005 Apr;30(2):251–290.
21.
Oliver S, Clarke-Jones L, Rees R, Milne R, Buchanan P, Gabbay J, Gyte G, Oakley A, Stein K. Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Health Technology Assessment. 2004 Apr;8(15).
22.
Oliver S, Liabo K, Stewart R, Rees R. Public involvement in research: making sense of the diversity. Journal of Health Services Research & Policy. 2015 Jan;20(1):45–51.
23.
Byrne A, Canavan J, Millar M. Participatory research and the voice‐centred relational method of data analysis: is it worth it? International Journal of Social Research Methodology. 2009 Feb;12(1):67–77.
24.
Cook WK. Integrating research and action: a systematic review of community-based participatory research to address health disparities in environmental and occupational health in the USA. Journal of Epidemiology & Community Health. 2008 Aug 1;62(8):668–676.
25.
Cullen AE, Coryn CLS, Rugh J. The Politics and Consequences of Including Stakeholders in International Development Evaluation. American Journal of Evaluation. 2011 Sept;32(3):345–361.
26.
Jones N, Villar E. Situating children in international development policy: challenges involved in successful evidence-informed policy influencing. Evidence & Policy: A Journal of Research, Debate and Practice. 2008 Jan 1;4(1):31–51.
27.
MARSHMAN Z, GIBSON BJ, OWENS J, RODD HD, MAZEY H, BAKER SR, BENSON PE, ROBINSON PG. Seen but not heard: a systematic review of the place of the child in 21st-century dental research. International Journal of Paediatric Dentistry. 2007 Sept;17(5):320–327.
28.
Chalmers I, Bracken MB, Djulbegovic B, Garattini S, Grant J, Gülmezoglu AM, Howells DW, Ioannidis JPA, Oliver S. How to increase value and reduce waste when research priorities are set. The Lancet. 2014 Jan;383(9912):156–165.
29.
Davies C, Wetherell MS and Barnett E. Deliberation: towards an understanding of practice. Citizens at the centre: deliberative participation in healthcare decisions [Internet]. Bristol: Policy; 2006. Available from: https://contentstore.cla.co.uk/secure/link?id=9125595f-a9f7-e711-80cd-005056af4099
30.
BLACKSHER E, DIEBEL A, FOREST PG, GOOLD SD, ABELSON J. What Is Public Deliberation? Hastings Center Report. 2012 Mar;42(2):14–16.
31.
Staley K, Doherty C. It’s not evidence, it’s insight: bringing patients’ perspectives into health technology appraisal at NICE. Research Involvement and Engagement. 2016 Dec;2(1).
32.
Watermeyer R. Public intellectuals vs. new public management: the defeat of public engagement in higher education. Studies in Higher Education. 2016 Dec;41(12):2271–2285.
33.
Percy-Smith B. ‘You think you know? ... You have no idea’: youth participation in health policy development. Health Education Research. 2006 Aug 8;22(6):879–894.
34.
Staley K. ‘Is it worth doing?’ Measuring the impact of patient and public involvement in research. Research Involvement and Engagement. 2015 Dec;1(1).
35.
Richardson L. Putting the Research Boot on the Policymakers’ Foot: Can Participatory Approaches Change the Relationship between Policymakers and Evaluation? Social Policy & Administration. 2013 Aug;47(4):483–500.
36.
Telford R, Boote JD, Cooper CL. What does it mean to involve consumers successfully in NHS research? A consensus study. Health Expectations. 2004 Aug 20;7(3):209–220.
37.
Brunton, G; Caird, J; Stokes, G; Stansfield, C; Kneale, D; Richardson, M ; and others. Review 1: Community engagement for health via coalitions, collaborations and partnerships: A systematic review [Internet]. EPPI Centre, Social Science Research Unit, Institute of Education, University of London; 2015. Available from: https://www.nice.org.uk/guidance/ng44/evidence/evidence-review-1-community-engagement-2015-brunton-pdf-2368403677
38.
Hubbard G, Kidd L, Donaghy E, McDonald C, Kearney N. A review of literature about involving people affected by cancer in research, policy and planning and practice. Patient Education and Counseling. 2007 Jan;65(1):21–33.
39.
Moules T, O’Brien N. Participation in perspective: reflections from research projects. Nurse Researcher. 2012 Jan 26;19(2):17–22.
40.
Grand, Ann ; Holliman, Richard ; Collins, Trevor ; Adams, Anne. ‘We muddle our way through’: shared and distributed expertise in digital engagement with research. Journal of Science Communication [Internet]. 2016;Vol.15(4). Available from: https://jcom.sissa.it/archive/15/04/JCOM_1504_2016_A05
41.
Murphy, M K ; Black, N A ; Lamping, D L ; Mckee, C M ; Sanderson, C F ; Askham, J ; Marteau, T. Consensus development methods, and their use in clinical guideline development. Health Technology Assessment [Internet]. 1998; Available from: https://www.journalslibrary.nihr.ac.uk/hta/hta2030/#/full-report
42.
Holliman, Richard et al. An Open Research University [Internet]. The Open University; 2015. Available from: http://oro.open.ac.uk/44255/
43.
Stokes G, Richardson M, Brunton G, Khatwa M, Thomas J. Review 3: Community engagement for health via coalitions, collaborations and partnerships (on-line social media and social networks) – a systematic review and metaanalysis [Internet]. EPPI-Centre, Social Science Research Unit, UCL Institute of Education; 2015. Available from: https://eppi.ioe.ac.uk/cms/Default.aspx?tabid=3478