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Armstrong MJ and Bloom JA (2017b) Patient involvement in guidelines is poor five years after institute of medicine standards: review of guideline methodologies. Research Involvement and Engagement 3:19

Armstrong MJ, Mullins CD, Gronseth GS et al. (2017a) Recommendations for patient engagement in guideline development panels: A qualitative focus group study of guideline-naïve patients. PLOS ONE 12(3): e0174329

Armstrong MJ, Rueda J-D, Gronseth GS et al. (2017c) Framework for enhancing clinical practice guidelines through continuous patient engagement. Health Expectations 20(1): 3–10

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Boivin A, Green J, van der Meulen J et al. (2009) Why consider patients’ preferences? A discourse analysis of clinical practice guideline developers. Medical Care 47(8): 908–15

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Carroll S, Embuldeniya G, Abelson J et al. (2017) Questioning patient engagement: research scientists’ perceptions of the challenges of patient engagement in a cardiovascular research network. Patient Preference and Adherence 11:1573–83

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Helsedirektoratel [The Norwegian Directorate of Health] (2013) Utredning, behandling og oppfølging av personer med psykoselidelser. Metode og prosess.

INVOLVE (2011) What you need to know about payment: an introductory guide for members of the public who are considering active involvement in NHS, public health or social care research. INVOLVE, Eastleigh

Karpusheff J, Haynes C, Glen F et al. (2020) Involving people with learning disabilities in guideline development. The Patient – Patient-Centered Outcomes Research 13(2): 251–4

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National Institute for Health and Care Excellence (2015) Violence and aggression: short-term management in mental health, health and community settings. NICE guideline 10

National Institute for Health and Care Excellence (2017) Child abuse and neglect. NICE guideline 76

National Institute for Health and Care Excellence (2019) Tuberculosis. NICE guideline 33

National Institute for Health and Care Excellence (2020b) Developing NICE guidelines: the manual. Process and methods 20

National Institute for Health and Care Excellence (2020a) Lay member payments and expenses

Nguyen T, Graham ID, Mrklas KJ et al. (2020) How does integrated knowledge translation (IKT) compare to other collaborative research approaches to generating and translating knowledge? Learning from experts in the field. Health Research Policy and Systems 18: 35

Ocloo J, Matthews R (2016) From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Quality Safety 25(8): 626–32

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Scottish Intercollegiate Guidelines Network (2019) SIGN 100: a handbook for patient and carer representatives. Edinburgh: SIGN

Scottish Intercollegiate Guideline Network (2021) SIGN 159 Epilepsies in children and young people: investigative procedures and management. Edinburgh: SIGN

Shippee ND, Domecq Garces JP, Prutsky Lopez GJ et al. (2015) Patient and service user engagement in research: a systematic review and synthesized framework. Health Expectations 18(5): 1151–166

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Van der Ham AJ, Shields LS, van der Horst R et al. (2014) Facilitators and barriers to service user involvement in mental health guidelines: lessons from The Netherlands. Administration and Policy in Mental Health and Mental Health Services Research 41(6): 712–23

Van der Ham AJ, van Erp N and Broerse JEW (2016) Monitoring and evaluation of patient involvement in clinical practice guideline development: lessons from the Multidisciplinary Guideline for Employment and Severe Mental Illness, the Netherlands. Health Expectations 19(2): 471–82

Van Wersch A and Eccles M (2001) Involvement of consumers in the development of evidence based clinical guidelines: practical experiences from the North of England evidence based guideline development programme. Quality in Health Care 10(1): 10–6

Further reading

Forsyth DR (2020) Group dynamics. 7th ed. Singapore: Cengage Learning Asia

Government Equalities Office and Equality and Human Rights Commission (2013) Equality Act 2010: guidance. [online] GOV.UK

Guinote A and Vescio TK, editors (2010) The social psychology of power. New York: The Guilford Press Royal College of Paediatrics and Child Health (2018) RCPCH Guidance for chairs, committee members and staff: Involving children, young people and family voice in committees