Public participation in health. A review of reviews
DOI:
https://doi.org/10.23938/ASSN.0172Keywords:
Public participation. Patient participation. Consumer participation. Health policy. Literature review ture.Abstract
Background. This study aims to synthesize knowledge about the role of the public’s participation in the definition, prioritization, rationalization, monitoring or control of policies, plans, governance, investment/disinvestment, and design of health services.
Methods. Review of review articles (narrative or systematic) about consumer participation indexed in PubMed until August 2016.
Results. Forty-two reviews were identified (eighteen systematic and twenty-four narrative). The extent of participation was provincial/regional or national. The issues addressed covered: What is public participation? What benefits are expected? Who participates in the representation of citizens? How and to what extent do citizens participate and with what outcomes? The impact of public participation has hardly been studied.
Conclusions. There is moderate evidence in support of the argument that public participation legitimizes decisions of the Health Authorities, and improves outcomes of health policies. There is consensus on how participation techniques should be applied but there is a need to inquire more deeply into the level of impact of this participation.
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References
ARNSTEIN SR. A ladder of citizen participation. J Am Inst Plann 1969; 35: 216-224.
LENAGHAN J. Involving the public in rationing decisions. The experience of citizens juries Health Policy 1999; 49: 45-61.
SINGER M. Community participation in health care decision making: Is it feasible? Can Med Assoc J 1995; 153: 421-424.
FRANKISH CJ, KWAN B, RATNER PA, HIGGINS JW, LARSEN C. Challenges of citizen participation in regional health authorities. Soc Sci Med 2002; 54: 1471-1480.
ABELSON J, FOREST PG, EYLES J, SMITH P, MARTIN E, GAUVIN FP. Deliberations about deliberative methods: issues in the design and evaluation of public participation processes. Soc Sci Med 2003; 57: 239-251.
SCUFFHAM PA, RATCLIFFE J, KENDALL E, BURTON P, WILSON A, CHALKIDOU K y col. Engaging the public in healthcare decision-making: quantifying preferences for healthcare through citizens’ juries. BMJ Open 2014; 4: e005437.
CONSEJO DE EUROPA, COMITÉ DE MINISTROS. La participación de los ciudadanos en la vida pública local. Recomendación Nº 19 del Comité de Ministros del Consejo de Europa e Informe Explicativo 2001. http://www.seat.mpr.gob.es/dam/es/portal/areas/politica_local/participacion-eell-aeuropeos/recomendacion.pdf. Consultado el 22 de agosto de 2016.
OCDE. Citizens as partners: OECD handbook on information, consultation and public participation in policy-making. OECD 2001. https://www.internationalbudget.org/wp-content/uploads/Citizens-as-Partners-OECD-Handbook.pdf. Consultado el 22 de agosto de 2016.
CYRIL S, SMITH BJ, POSSAMAI-INESEDY A, RENZAHO AM. Exploring the role of community engagement in improving the health of disadvantaged populations: a systematic review. Glob Health Action 2015; 8: 29842.
MARTÍN-GARCÍA M, PONTE-MITTELBRUN C, SÁNCHEZ-BAYLE M. Social participation and community orientation in health services. Gac Sanit 2006; 20: 192-202.
GAUVIN FP, ROSS MC, BURTAN M. Citizen participation in health impact assessment: overview of issues. Quebec: National Collaborating Centre for Healthy Public Policy 2012. http://www.ncchpp.ca/docs/EIS-HIA_ParticipationOverview_En.pdf.
MITTON C, SMITH N, PEACOCK S, EVOY B, ABELSON J. Public participation in health care priority setting: A scoping review. Health Policy 2009; 91: 219-228.
SOUTH J, STANSFIELD J, MEHTA P, BRICE A, CONNOLLY AM, DAVIES C y col. A guide to community-centred approaches for health and wellbeing. Londres: Public Health England Publications, 2015.
LODENSTEIN E, DIELEMAN M, GERRETSEN B, BROERSE JE. Health provider responsiveness to social accountability initiatives in low- and middle-income countries: a realist review. Health Policy Plan 2016; 1-16.
LODENSTEIN E, DIELEMAN M, GERRETSEN B, BROERSE JE. A realist synthesis of the effect of social accountability interventions on health service providers’ and policymakers’ responsiveness. Syst Rev 2013; 2: 98.
CONEY S. Effective consumer voice and participation for New Zealand. A systematic review of the evidence. New Zealand Guidelines Group 2004. https://www.health.govt.nz/system/files/documents/publications/050511_consumer_report.pdf. Consultado el 24 de agosto de 2016.
LI KK, ABELSON J, GIACOMINI M, CONTANDRIOPOULOS D. Conceptualizing the use of public involvement in health policy decision-making. Soc Sci Med 2015; 138: 14-21.
CRAWFORD MJ, RUTTER D, MANLEY C, WEAVER T, BHUI K, FULOP N y col. Systematic review of involving patients in the planning and development of health care. BMJ 2002; 325: 1263.
CALLAGHAN G, WISTOW G. Governance and public involvement in the British National Health Service: Understanding difficulties and developments. Soc Sci Med 2006; 63: 2289-2300.
LIBERATI A, ALTMAN DG, TETZLAFF J, MULROW C, GØTZSCHE PC, IOANNIDIS JPA y col. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: Explanation and elaboration. BMJ 2009; 339: b2700.
SERAPIONI M, RAQUEL-MATOS A. Citizen participation and discontent in three Southern European health systems. Soc Sci Med 2014; 123: 226-233.
CALVILLO J, ROMÁN I, ROA LM. How technology is empowering patients? A literature review. Health Expect 2013; 18: 643-652.
RYAN M, SCOTT DA, REEVES C, BATE A, VAN TEIJLINGEN ER, RUSSELL EM y col. Eliciting public preferences for healthcare: a systematic review of techniques. Health Technol Assess 2001; 5: 1-186.
CONKLIN A, MORRIS Z, NOLTE E. What is the evidence base for public involvement in health-care policy?: results of a systematic scoping review. Health Expect 2012; 18: 153-165.
GEORGE AS, MEHRA V, SCOTT K, SRIRAM V. Community participation in health systems research: a systematic review assessing the state of research, the nature of interventions involved and the features of engagement with communities. PLoS One 2015; 10: e0141091.
STEWART E. What is the point of citizen participation in health care? J Health Serv Res Policy 2013; 18: 124-126.
SARRAMI-FOROUSHANI P, TRAVAGLIA J, DEBONO D, BRAITHWAITE J. Key concepts in consumer and community engagement: a scoping meta-review. BMC Health Serv Res 2014; 14: 250.
TENBENSEL T. Virtual special issue introduction: Public participation in health policy in high income countries - A review of why, who, what, which, and where? Soc Sci Med 2010; 71: 1537-1540.
KRINKS R, KENDALL E, WHITTY JA, SCUFFHAM PA. Do consumer voices in health-care citizens’ juries matter? Health Expect 2015. doi: 10.1111/hex.12397.
STREET J, DUSZYNSKI K, KRAWCZYK S, BRAUNACK-MAYER A. The use of citizens’ juries in health policy decision-making: a systematic review. Soc Sci Medicine 2014; 109: 1e9.
O’MARA-EVES A, BRUNTON G, MCDAID D, OLIVER S, KAVANAGH J, JAMAL y col. Community engagement to reduce inequalities in health: a systematic review, meta-analysis and economic analysis. Public Health Res 2013; 1.
CARMAN KL, DARDESS P, MAURER M, SOFAER S, ADAMS K, BECHTEL C y col. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood) 2013; 32: 223-231.
FREILE-GUTIÉRREZ B. Participación ciudadana en el contexto de la evaluación de tecnologías sanitarias. Rev Med Chile 2014; 142: S27-S32.
MORAN R, DAVIDSON P. An uneven spread: a review of public involvement in the National Institute of Health Research’s Health Technology Assessment program. Int J Technol Assess Health Care 2011; 27: 343-347.
BOOTE J, TELFORD R, COOPER C. Consumer involvement in health research: a review and research agenda. Health Policy 2002; 61: 213-216.
BOOTE J, BAIRD W, BEECROFT C. Public involvement at the design stage of primary health research: A narrative review of case examples. Health Policy 2010; 95: 10-23.
TRITTER JQ. Revolution or evolution: the challenges of conceptualising patient and public involvement in a consumerist world. Health Expect 2009; 12: 275-287.
CONKLIN A, MORRIS ZS AND NOLTE E. Involving the public in healthcare policy: an update of the research evidence and proposed evaluation framework. Cambridge: RAND Europe; 2010.
https://www.rand.org/content/dam/rand/pubs/technical_reports/2010/RAND_TR850.pdf. Consultado el 24 de agosto de 2016.
CARR G. Stakeholder and public participation in river basin management. An introduction. WIREs Water 2015; 2: 393-405.
DEGELING CH, CARTER SM, RYCHETNIK L. Which public and why deliberate? A scoping review of public deliberation in public health and health policy research. Soc Sci Med 2015; 131: 114-121.
BAXTER S, CLOWES M, MUIR D, BAIRD W, BROADWAY-PARKINSON A, BENNETT C. Supporting public involvement in interview and other panels: a systematic review. Health Expect 2016; 20: 807-817.
RUMMERY K. Healthy partnerships, healthy citizens? An international review of partnerships in health and social care and patient/user outcomes. Soc Sci Med 2009; 69: 1797-1804.
ROWE G, FREWER LJ. A typology of public engagement mechanisms. Sci Technol Human Values 2005; 30: 251-290.
CHURCH J, SAUNDERS D, WANKE M, PONG R, SPOONER C, DORGAN M. Citizen participation in health decision-making: past experience and future prospects. J Public Health Policy 2002; 23: 12-32.
GORSKY M. Community involvement in hospital governance in Britain: evidence from before the National Health Service. Int J Health Serv 2008; 38: 751-771.
KOHLER JC, MARTINEZ MG. Participatory health councils and good governance: healthy democracy in Brazil? Int J Equity Health 2015; 14: 21.
MULLEN PM. Public involvement in health care priority setting: an overview of methods for eliciting values. Health Expect 1999; 2: 222-234.
IREDALE R, LONGLEY M. From passive subject to active agent: the potential of citizens’ juries for nursing research. Nurse Educ Today 2007; 27: 788-795.
MAXWELL J, ROSELL S, FOREST P. Giving citizens a voice in healthcare policy in Canada. BMJ 2003; 326: 1031-1033.
WHITTY JA, BURTON P, KENDALL E, RATCLIFFE J, WILSON A, LITTLEJOHNS P y col. Harnessing the potential to quantify public preferences for healthcare priorities through citizens’ juries. Int J Health Policy Manag 2014; 3: 57-62.
RICE M, HANCOCK T. Equity, sustainability and governance in urban settings. Glob Health Promot 2016; 23: 94-97.
WOOLLEY JP, MCGOWAN ML, TEARE H, COATHUP V, FISHMAN JR, SETTERSTEN RA JR y col. Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives. BMC Med Ethics 2016; 17: 33.
NITSCH M, WALDHERR K, DENK E, GRIEBLER U, MARENT B, FORSTER R. Participation by different stakeholders in participatory evaluation of health promotion: a literature review. Eval Program Plann 2013; 40: 42-54.
WILLIAMSON L. Patient and citizen participation in health: the need for improved ethical support. Am J Bioeth 2014; 14: 4-16.
MURPHY NJ. Citizen deliberation in setting health-care priorities. Health Expect 2005; 8: 172-181.
PHILLIPS NM, STREET M, HAESLER E. A systematic review of reliable and valid tools for the measurement of patient participation in healthcare. BMJ Qual Saf 2016; 25: 110-117.
NILSEN ES, MYRHAUG HT, JOHANSEN M, OLIVER S, OXMAN AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material (review). Cochrane Database Syst Rev 2006: CD004563.
NICE GUIDELINE. Community engagement: improving health and wellbeing and reducing health inequalities. NICE; 2016.
https://www.nice.org.uk/guidance/ng44. Consultado el 23 de agosto de 2016.
COLOMBO C, MOJA L, GONZALEZ-LORENZO M, LIBERATI A, MOSCONI P. Patient empowerment as a component of health system reforms: rights, benefits and vested interests. Intern Emerg Med 2012; 7: 183-187.
BRETT J, STANISZEWSKA S, MOCKFORD C, HERRON-MARX S, HUGHES J, TYSALL C y col. A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient 2014; 7: 387-395.
DECLARACIÓN DE MENORCA SOBRE PARTICIPACIÓN EN SALUD. Conclusiones del Encuentro “Participación ciudadana en políticas, estrategias y programas de salud” Escuela de Salud Pública de Menorca, 22-23 septiembre 2016.: http://evsp2016.cime.es//documents/documents/316docpub.pdf. Consultado el 11 de octubre de 2016.
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