Values associated with public involvement in health and social care research: a narrative review

Much has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI.

[1]  P. Savage Ethics and Health Care , 2007 .

[2]  S. Staniszewska,et al.  Moving forward: Understanding the negative experiences and impacts of patient and public involvement in health service planning, development and evaluation , 2011 .

[3]  C. Samuel-Hodge,et al.  Community‐Based Participatory Research: Assessing the Evidence: Summary , 2004 .

[4]  J. McLaughlin,et al.  Children's participation in health research: from objects to agents? , 2010, Child: care, health and development.

[5]  J Gabbay,et al.  Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. , 2004, Health technology assessment.

[6]  K. Karban,et al.  Service User and Carer Involvement in Mental Health Education, Training and Research – A Literature Review , 2009 .

[7]  Gordon Grant,et al.  User involvement in research. , 2010 .

[8]  J. Boote,et al.  Health researchers’ attitudes towards public involvement in health research , 2009, Health expectations : an international journal of public participation in health care and health policy.

[9]  A D Oxman,et al.  Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. , 2006, The Cochrane database of systematic reviews.

[10]  Jon Glasby Understanding Health and Social Care , 2007 .

[11]  P. Butow,et al.  Operationalising a model framework for consumer and community participation in health and medical research , 2007, Australia and New Zealand health policy.

[12]  Jacqueline E. W. Broerse,et al.  Stakeholder participation in health research agenda setting: the case of asthma and COPD research in the Netherlands , 2006 .

[13]  Helen R. Bayliss,et al.  The PIRICOM study : a systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research , 2010 .

[14]  R. Hope The Ten Essential Shared Capabilities - A Framework for the Whole of the Mental Health Workforce , 2004 .

[15]  M. Glynn,et al.  Recommendations and Reports , 2009 .

[16]  J. Repper,et al.  Good practice guidance for involving carers, family members and close friends of service users in research , 2011 .

[17]  A. Oxman,et al.  Improving the use of research evidence in guideline development: 10. Integrating values and consumer involvement , 2006, Health research policy and systems.

[18]  The ethics of conducting research with mental health service users. , 2009, British journal of nursing.

[19]  J. Glasby,et al.  Cases for Change: User Involvement in Mental Health Services and Research , 2004 .

[20]  Jennie Popay,et al.  Guidance on the conduct of narrative synthesis in systematic Reviews. A Product from the ESRC Methods Programme. Version 1 , 2006 .

[21]  Hugh McLaughlin Why Service Users Bother or Why Bother Involving Service Users in Research , 2009 .

[22]  J. Warren Service User and Carer Participation in Social Work , 2011 .

[23]  B. Schrank,et al.  Handbook of Service User Involvement in Mental Health Research , 2009 .

[24]  Rosemary Barber,et al.  Can the impact of public involvement on research be evaluated? A mixed methods study , 2012, Health expectations : an international journal of public participation in health care and health policy.

[25]  R. Littlechild,et al.  User Involvement and Participation in Social Care: Research Informing Practice , 2000 .

[26]  E. Hanson,et al.  Introduction : what counts as knowledge , whose knowledge counts ? Towards authentic participatory enquiry , 2007 .

[27]  Arch D. Robison,et al.  Chapter 2 – Background , 2012 .

[28]  J. Boote,et al.  Public Involvement in the Design and Conduct of Clinical Trials , 2011 .

[29]  Andrew D Oxman,et al.  Improving the use of research evidence in guideline development , 2007 .

[30]  P. Beresford Theory and practice of user involvement in research: making the connection with public policy and practice , 2013 .

[31]  K N Lohr,et al.  Community-based participatory research: assessing the evidence. , 2004, Evidence report/technology assessment.

[32]  Shawna L. Mercer,et al.  The value and challenges of participatory research: strengthening its practice. , 2008, Annual review of public health.

[33]  Marjorie S Rosenthal,et al.  Dissemination of results in community-based participatory research. , 2010, American journal of preventive medicine.

[34]  J. Boote,et al.  Consumer involvement in health research: a review and research agenda. , 2002, Health policy.

[35]  A. Amos Health Promotion: Models and Values , 1990 .

[36]  Jonathan Boote,et al.  Public involvement at the design stage of primary health research: a narrative review of case examples. , 2010, Health policy.

[37]  P. Almond,et al.  What is consumerism and has it had an impact on health visiting provision? A literature review. , 2001, Journal of advanced nursing.

[38]  Y. Bombard,et al.  Eliciting ethical and social values in health technology assessment: A participatory approach. , 2011, Social Science & Medicine (1967).

[39]  B. Schrank,et al.  Comprar Handbook of Service User Involvement in Mental Health Research | Jan Wallcraft | 9780470997956 | Wiley , 2009 .

[40]  Ken Stein,et al.  A multidimensional conceptual framework for analysing public involvement in health services research , 2008, Health expectations : an international journal of public participation in health care and health policy.

[41]  J. Popay,et al.  Developing a model to enhance the capacity of statutory organisations to engage with lay communities , 2002, Journal of health services research & policy.

[42]  G. Hubbard,et al.  Involving people affected by cancer in research: a review of literature. , 2008, European journal of cancer care.

[43]  A. Faulkner The ethics of survivor research: Guidelines for the ethical conduct of research carried out by mental health service users and survivors , 2004 .

[44]  M. Preston-shoot,et al.  Emerging from out of the shadows? Service user and carer involvement in systematic reviews , 2005 .

[45]  M. Mayr Critical perspectives on user involvement , 2013, International Journal of Integrated Care.

[46]  M. McPhail Service user and carer involvement : beyond good intentions , 2008 .

[47]  J. Sitzia,et al.  Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice. , 2008, International journal of nursing studies.

[48]  C. McKevitt,et al.  Involving older people in health research. , 2007, Age and ageing.

[49]  A. Bryman,et al.  Defining 'Quality' in Social Policy Research: Views, Perceptions and a Framework for Discussion , 2006 .

[50]  Sandy Oliver,et al.  Patients’ and clinicians’ research priorities , 2011, Health expectations : an international journal of public participation in health care and health policy.

[51]  Health service staff attitudes to community representatives on committees. , 2006, Journal of health organization and management.