Key concepts in consumer and community engagement: a scoping meta-review

BackgroundAlthough consumer and community engagement (CCE) in health care is receiving increasing attention, research and practice in this area are hampered by the variability of concepts and terminology commonly employed. This scoping meta-review aims to identify key CCE concepts and examine terminology used to describe them.MethodsIn a scoping meta-review, an extensive list of 47 phrases and 11 Medical Subject Headings (MeSH) was used to undertake a comprehensive and systematic search in PubMed Central, Embase, EBM reviews, CINAHL, APAPsycNET, and Scopus.Results59 systematic reviews met the selection criteria and were included in the final analysis. The analysis identified nine different concepts related to CCE: shared decision making, self-management, CCE in health care systems, community-based health promotion, providing access to health care, rehabilitation, participation in research, collaboration in research design and conduct, and peer support. The identified concepts differ from each other in many aspects including the aim of the activity, the role of consumers and the type of professionals’ involvement. Each concept was described by a range of terms, with some terms shared by different concepts. In addition, two overlapping concepts of patient-centeredness and patient empowerment were recognised.ConclusionsThis study describes CCE-related key concepts and provides new insight into their relationship with different CCE-related terms. Identification of key CCE-related concepts and terms will be useful to focus future studies and initiatives and enhance production of CCE-related evidence.

[1]  T. Szasz,et al.  A contribution to the philosophy of medicine; the basic models of the doctor-patient relationship. , 1956, A.M.A. archives of internal medicine.

[2]  Jennie Popay,et al.  The experience of community engagement for individuals: a rapid review of evidence. , 2011, Health & social care in the community.

[3]  K. Brock,et al.  Are rehabilitation and/or care co-ordination interventions delivered in the community effective in reducing depression, facilitating participation and improving quality of life after stroke? , 2011, Disability and rehabilitation.

[4]  J. Braithwaite,et al.  Communities of Practice in the Health Sector A systematic review of the peer-reviewed literature Centre for Clinical Governance Research Australian Institute of Health Innovation , 2010 .

[5]  S. Tse,et al.  Can Consumer-Led Mental Health Services be Equally Effective? An Integrative Review of CLMH Services in High-Income Countries , 2011, Community Mental Health Journal.

[6]  T Parsons,et al.  The sick role and the role of the physician reconsidered. , 1975, The Milbank Memorial Fund quarterly. Health and society.

[7]  J. Cornuz,et al.  Shared decision making development in Switzerland: room for improvement! , 2011, Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen.

[8]  I. Herremans,et al.  When Suits Meet Roots: The Antecedents and Consequences of Community Engagement Strategy , 2010 .

[9]  T. Wykes,et al.  Rapid progress or lengthy process? electronic personal health records in mental health , 2011, BMC psychiatry.

[10]  Marien González-Lorenzo,et al.  Patient involvement and shared decision-making in mental health care. , 2011, Current Clinical Pharmacology.

[11]  R B Bruegel,et al.  Patient empowerment--a trend that matters. , 1998, Journal of AHIMA.

[12]  Michele Tarsilla.  Cochrane Handbook for Systematic Reviews of Interventions , 2010, Journal of MultiDisciplinary Evaluation.

[13]  E. Bélanger,et al.  Shared decision-making in palliative care: A systematic mixed studies review using narrative synthesis , 2011, Palliative medicine.

[14]  Sophie Hill,et al.  Consumer‐oriented interventions for evidence‐based prescribing and medicines use: an overview of systematic reviews , 2011, The Cochrane database of systematic reviews.

[15]  C. Terwee,et al.  A systematic review of instruments assessing participation: challenges in defining participation. , 2011, Archives of physical medicine and rehabilitation.

[16]  R. Schalock,et al.  Person-centered planning: analysis of research and effectiveness. , 2010, Intellectual and developmental disabilities.

[17]  A. J. van der Beek,et al.  Effectiveness of Web-based Interventions on Patient Empowerment: A Systematic Review and Meta-analysis , 2010, Journal of medical Internet research.

[18]  M. Salyers,et al.  A Review of Consumer-Provided Services on Assertive Community Treatment and Intensive Case Management Teams: Implications for Future Research and Practice , 2011, Journal of the American Psychiatric Nurses Association.

[19]  K. Myers,et al.  Research in child and adolescent telemental health. , 2011, Child and adolescent psychiatric clinics of North America.

[20]  J. Sieber,et al.  Ethical issues in mental health research: the case for community engagement , 2011, Current opinion in psychiatry.

[21]  Joseph D Tariman,et al.  Preferred and actual participation roles during health care decision making in persons with cancer: a systematic review. , 2010, Annals of oncology : official journal of the European Society for Medical Oncology.

[22]  M. C. Vega,et al.  Community Participation in Chagas Disease Vector Surveillance: Systematic Review , 2011, PLoS neglected tropical diseases.

[23]  A. House,et al.  Involving service users as service providers for adult statutory mental health services , 2003 .

[24]  Josip Car,et al.  Interventions for enhancing consumers' online health literacy. , 2011, The Cochrane database of systematic reviews.

[25]  K. Stronks,et al.  Targeting physical activity and nutrition interventions towards mothers with young children: a review on components that contribute to attendance and effectiveness , 2010, Public Health Nutrition.

[26]  岩瀬 顕秀,et al.  University of New South Wales (UNSW) , 2013, The Grants Register 2022.

[27]  J. Boote,et al.  Public involvement in the systematic review process in health and social care: a narrative review of case examples. , 2011, Health policy.

[28]  J. Hibbard,et al.  What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. , 2013, Health affairs.

[29]  M. Tanner,et al.  The architecture and effect of participation: a systematic review of community participation for communicable disease control and elimination. Implications for malaria elimination , 2011, Malaria Journal.

[30]  M. Dijkers.  Issues in the conceptualization and measurement of participation: an overview. , 2010, Archives of physical medicine and rehabilitation.

[31]  D. gallagher-Thompson,et al.  Recruitment and Retention of Ethnic Minority Elders into Clinical Research , 2010, Alzheimer disease and associated disorders.

[32]  Ferdinand de Saussure.  Course in General Linguistics , 1916 .

[33]  Lucie Richard,et al.  Inventory and analysis of definitions of social participation found in the aging literature: proposed taxonomy of social activities. , 2010, Social science & medicine.

[34]  Z. Bhutta,et al.  Community-based intervention packages for reducing maternal and neonatal morbidity and mortality and improving neonatal outcomes. , 2010, The Cochrane database of systematic reviews.

[35]  France Légaré,et al.  Moving SDM forward in Canada: milestones, public involvement, and barriers that remain. , 2011, Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen.

[36]  H. Roozen,et al.  Community reinforcement and family training: an effective option to engage treatment-resistant substance-abusing individuals in treatment. , 2010, Addiction.

[37]  E. Maticka-Tyndale,et al.  Peer-led interventions to reduce HIV risk of youth: a review. , 2010, Evaluation and program planning.

[38]  Werner Vach,et al.  Mediating the effect of self-care management intervention in type 2 diabetes: a meta-analysis of 47 randomised controlled trials. , 2010, Patient education and counseling.

[39]  S. Gilbody.  Involving service users as researchers for the evaluation of adult statutory mental health services (Protocol) , 2009 .

[40]  C. Oliver,et al.  A review of defining and measuring sociability in children with intellectual disabilities. , 2011, Research in developmental disabilities.

[41]  D. Schwappach,et al.  Medication errors in chemotherapy: incidence, types and involvement of patients in prevention. A review of the literature. , 2010, European journal of cancer care.

[42]  C. Renzi,et al.  Participation of patients and citizens in healthcare decisions in Italy. , 2007, Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen.

[43]  A. Weightman,et al.  Community wide interventions for increasing physical activity , 2011, The Cochrane database of systematic reviews.

[44]  H. Arksey,et al.  Scoping studies: towards a methodological framework , 2005 .

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

[46]  Catherine Best,et al.  Shared decision making interventions for people with mental health conditions. , 2010, The Cochrane database of systematic reviews.

[47]  J. Karlawish,et al.  Addressing the challenges to successful recruitment and retention in Alzheimer's disease clinical trials , 2010, Alzheimer's Research & Therapy.

[48]  P. Pilkington,et al.  Rhetoric or reality? A systematic review of the impact of participatory approaches by UK public health units on health and social outcomes. , 2010, Journal of public health.

[49]  D. Scanlon,et al.  Making sense of "consumer engagement" initiatives to improve health and health care: a conceptual framework to guide policy and practice. , 2013, The Milbank quarterly.

[50]  Tim Carter,et al.  A review of the literature on peer support in mental health services , 2011, Journal of mental health.

[51]  M. Young,et al.  Health services research , 2008, Journal of General Internal Medicine.

[52]  Daniel Wikler,et al.  The Sick Role and the Role of the Physician Reconsidered , 1975 .

[53]  K. Curtis-Tyler.  Levers and barriers to patient-centred care with children: findings from a synthesis of studies of the experiences of children living with type 1 diabetes or asthma. , 2011, Child: care, health and development.

[54]  S. Kirk,et al.  A literature review of children's and young people's participation in decisions relating to health care. , 2010, Journal of clinical nursing.

[55]  M. Crawford,et al.  Systematic review of involving patients in the planning and development of health care , 2002, BMJ : British Medical Journal.

[56]  J. Wilbur,et al.  Community-based research: barriers to recruitment of African Americans. , 2004, Nursing outlook.

[57]  D. Levac,et al.  Scoping studies: advancing the methodology , 2010, Implementation science : IS.

[58]  L. Duggan,et al.  Interventions for learning disabled sex offenders. , 2008, The Cochrane database of systematic reviews.

[59]  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.

[60]  T. Packer,et al.  When East meets Wests: community-based rehabilitation in Chinese communities , 2011, Disability and rehabilitation.

[61]  L. Mistler,et al.  Pushing the envelope: shared decision making in mental health. , 2010, Psychiatric rehabilitation journal.

[62]  J. Elster.  Making Sense of Marx , 1986 .

[63]  A. Yancey,et al.  Effective recruitment and retention of minority research participants. , 2006, Annual review of public health.

[64]  D. Menon,et al.  Role of patient and public participation in health technology assessment and coverage decisions , 2011, Expert review of pharmacoeconomics & outcomes research.

[65]  S. Heller,et al.  Organizing and delivering diabetes education and self-care support: Findings of scoping project , 2011, Journal of health services research & policy.

[66]  W. Turner,et al.  Treatment foster care for improving outcomes in children and young people. , 2008, The Cochrane database of systematic reviews.