Lay participation in health care decision making lacks an adequate analysis from an organizational perspective. This article aims to develop conceptual devices to analyze policies and practices and the ways in which these could be further developed. By recapping established frameworks and drawing on theories of professional organizations, four participatory roles and their potential to adapt organizational decisions to internal requirements and external challenges are elaborated. While individual patient participation is widely acknowledged, there is still a lack of systematic approaches to the roles of significant others, patient groups, and the broader community and their implementation within health care organizations.
AbelsonJ.ForestP. G.EylesJ.SmithP.MartinE.GauvinF. P. (2003). Deliberations about deliberative methods: Issues in the design and evaluation of public participation processes. Social Science & Medicine, 57, 239-251.
2.
ArnsteinS. R. (1969). A ladder of citizen participation. Journal of the American Institute of Planners, 35, 216-224.
3.
BaggottR.ForsterR. (2008). Health consumer and patients’ organizations in Europe: Towards a comparative analysis. Health Expectations, 11, 85-94.
4.
BarryM.LevinC.MacCuaigM.MulleyA.SepuchaK. (2011). Shared decision making: Vision to reality. Health Expectations, 14, 1-5.
5.
BorkmanT. (1976). Experiential knowledge: A new concept for the analysis of self-help groups. Social Service Review, 50, 445-456.
6.
CahillP.PapageorgiouA. (2007). Triadic communication in the primary care paediatric consultation: A review of the literature. British Journal of General Practice, 57, 904-911.
7.
CharlesC.DeMaioS. (1993). Lay participation in health care decision making: A conceptual framework. Journal of Health Politics, Policy and Law, 18, 881-904.
8.
CharlesC.GafniA.WhelanT. J. (1997). Shared decision-making in the medical encounter: What does it mean? (Or it takes at least two to tango). Social Science & Medicine, 44, 681-692.
9.
ChurchJ.SaundersD.WankeM.PongR.SpoonerC.DorganM. (2002). Citizen participation in health decision-making: Past experience and future prospects. Journal of Public Health Policy, 23, 12-32.
10.
ClearyM.FreemanA.WalterG. (2006). Carer participation in mental health service delivery. International Journal of Mental Health Nursing, 15, 189-194.
11.
CoulterA. (2002). The autonomous patient: Ending paternalism in medical care. London, England: Nuffield Trust.
12.
DaigneaultP. M.JacobS. (2009). Toward accurate measurement of participation: Rethinking the conceptualization and operationalization of participatory evaluation. American Journal of Evaluation, 30, 330-348.
13.
Department of Health. (2006). A stronger local voice: A framework for creating a stronger local voice in the development of health and social care services (A document for information and comment). London, England: Department of Health, NHS.
14.
EdwardsA.ElwynG. (2006). Inside the black box of shared decision making: Distinguishing between the process of involvement and who makes the decision. Health Expectations, 9, 307-320.
15.
ElwynG.Miron-ShatzT. (2010). Deliberation before determination: The definition and evaluation of good decision making. Health Expections, 13, 139-147.
16.
FafardP.RocherF.CôtéC. (2009). Clients, citizens and federalism: A critical appraisal of integrated service delivery in Canada. Canadian Public Administration, 52, 549-568.
17.
ForbatL.HubbardG.KearneyN. (2009). Patient and public involvement: Models and muddles. Journal of Clinical Nursing, 18, 2547-2554.
18.
ForsterR.Braunegger-KallingerG.KrajicK. (2011). Austrian health consumer groups—Voices gaining strength? In LöfgrenH.De LeeuwE.LeahyM. (Eds.), Democratizing health: Consumer groups in the policy process (pp. 143-160). Cheltenham, UK: Edward Elgar.
19.
ForsterR.GabeJ. (2008). Voice or choice? Patient and public involvement in the national health service in England under new Labour. International Journal of Health Services, 38, 333-356.
20.
GabeJ.OlumideG.BuryM. (2004). ‘It takes three to tango’: A framework for understanding patient partnership in paediatric clinics. Social Science &Medicine, 59, 1071-1079.
21.
GauvinF. P.AbelsonJ.GiacominiM.EylesJ.LavisJ. N. (2010). “It all depends”: Conceptualizing public involvement in the context of health technology assessment agencies. Social Science & Medicine, 70, 1518-1526.
22.
GerhardsJ. (2001). Der Aufstand des Publikums. Eine systemtheoretische Interpretation des Kulturwandels in Deutschland zwischen 1960 und 1989 [The rebellion of the citizens: A systemtheoretical interpretation of cultural change of the German society (1960–1989)]. Zeitschrift für Soziologie, 30, 163-184.
23.
HasenfeldY. (1983). Human service organizations. Upper Saddle River, NJ: Prentice-Hall.
24.
HoggC. N. L. (2007). Patient and public involvement: What next for the NHS?Health Expectations, 10, 129-139.
25.
HughesD.MullenC.Vincent-JonesP. (2009). Choice vs. voice? PPI policies and the re-positioning of the state in England and Wales. Health Expectations, 12, 237-250.
26.
HunterD. J. (2006). From tribalism to corporatism: The continuing managerial challenge to medical dominance. In KelleherD.GabeJ.WilliamsG. (Eds.), Challenging medicine (2nd ed., pp. 1-24). New York, NY: Routledge.
27.
KelleherD. (2006). Self-help groups and their relationship to medicine. In KelleherD.GabeJ.WilliamsG. (Eds.), Challenging medicine (2nd ed., pp. 104-121). London, England: Routledge.
28.
KirkpatrickI.DentM.JespersenP. K. (2011). The contested terrain of hospital management: Professional projects and healthcare reforms in Denmark. Current Sociology, 59, 489-506.
29.
LabonteR. (1997). Power, participation and partnership for health promotion. Victoria, Australia: Victorian Health Promotion Foundation.
30.
Le GrandJ. (2007). The other invisible hand: Delivering public services through choice and competition. Princeton, NJ: Princeton University Press.
31.
LitvaA.CanvinK.ShepherdM.JacobyA.GabbayM. (2009). Lay perceptions of the desired role and type of user involvement in clinical governance. Health Expectations, 12, 81-91.
32.
LitvaA.CaostJ.DonovanJ.EylesJ.SheperdM.TacchiJ.MorganK. (2002). ‘The public is too subjective’: Public involvement at different levels of health-care decision making. Social Science & Medicine, 54, 1825-1837.
33.
Llewellyn-JonesL.HarveyD. (2005). The development of a health promotion community participation framework. Australian Journal of Primary Health, 11(2), 136-146.
34.
LöfgrenH.De LeeuwE.LeahyM. (Eds.). (2011). Democratizing health: Consumer groups in the policy process. Cheltenham, UK: Edward Elgar.
35.
LuhmannN. (1995). Social systems. Stanford, CA: Stanford University Press.
36.
LuhmannN. (2003). Organization. In BakkenT.HernesT. (Eds.). Autopoietic organization theory (pp. 31-52). Copenhagen, Denmark: Copenhagen Business School Press.
37.
MartinG. P. (2009). Whose health, whose care, whose say? Some comments on public involvement in NHS commissioning arrangements. Critical Public Health, 19, 123-132.
38.
MartinG. P.FinnR. (2011). Patients as team members: Opportunities, challenges and paradoxes of including patients in multi-professional healthcare teams. Sociology of Health & Illness, 33, 1050-1065.
39.
McKeeM.HealyJ.EdwardsN.HarrisonA. (2002). Pressures for change. In McKeeM.HealyJ. (Eds.), Hospitals in a changing Europe (pp. 36-58). Buckingham, UK: Open University Press.
40.
MintromM. (2003). Market organizations and deliberative democracy: Choice and voice in public service delivery. Administration & Society, 35, 52-81.
41.
MintzbergH. (1979). The structuring of organizations. Englewood Cliffs, NJ: Prentice-Hall.
42.
MurphyN. J. (2005). Citizen deliberation in setting health-care priorities. Health Expectations, 8, 172-181.
43.
NumeratoD.SalvatoreD.FattoreG. (2012). The impact of management on medical professionalism: A review. Sociology of Health & Illness, 34, 626-664.
44.
OliverS. R.ReesR. W.Clarke-JonesL.MilneR.OakleyA. R.GabbayJ.GyteG. (2008). A multidimensional conceptual framework for analysing public involvement in health services research. Health Expectations, 11, 72-84.
45.
RapleyT. (2008). Distributed decision making: The anatomy of decisions-in-action. Sociology of Health & Illness, 30, 429-444.
46.
RiseM. B.SolbjorM.LaraM. C.WesterlundH.GrimstadH.SteinsbekkA. (2011). Same descriptions, different values. How services users and providers define patient and public involvement. Health Expections. Advance Online Publication. doi:10.1111/j.1369–7625.2011.00713.x
47.
SimovskaV.JensenB. B. (2009). Conceptualizing participation—the health of children and young people. Copenhagen, Denmark: WHO Regional Office for Europe.
48.
StichwehR. (2005). Wissen und die professionen in einer organisationsgesellschaft [Knowledge and the professions in an organisation society]. In KlatetzkiT.TackeV. (Eds.), Organisation und profession (pp. 31-44). Wiesbaden: Verlag für Sozialwissenschaften.
49.
TambuyzerE.PietersG.Van AudenhoveC. (2011). Patient involvement in mental health care: One size does not fit all. Health Expectations. Advance Online Publication. doi:10.1111/j.1369–7625.2011.00743.x
50.
TenbenselT. (2010). Virtual special issue introduction: Public participation in health policy in high income countries—A review of why, who, what, which, and where?Social Science & Medicine, 71, 1537-1540.
51.
ThompsonA. G. H. (2007). The meaning of patient involvement and participation in health care consultations: A taxonomy. Social Science & Medicine, 64, 1297-1310.
52.
TritterJ. Q. (2009). Revolution or evolution: The challenges of conceptualizing patient and public involvement in a consumerist world. Health Expectations, 12, 275-287.
53.
TritterJ. Q.McCallumA. (2006). The snakes and ladders of user involvement: Moving beyond Arnstein. Health Policy, 76, 156-168.
54.
TrojanA.NickelS. (2011). Integration von Selbsthilfefreundlichkeit in das Gesundheitswesen—Entwicklungen und Perspektiven [Integration of self-help associations into the health services system—Developments and perspectives]. Das Gesundheitswesen, 73, 67-72.
55.
van de BovenkampH. M.TrappenburgM. J.GritK. J. (2009). Patient participation in collective healthcare decision making: The Dutch model. Health Expectations, 13, 73-85.
56.
VanderstraetenR. (2007). Professions in organizations, professional work in education. British Journal of Sociology of Education, 28, 621-635.
57.
van StaaA. (2011). Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: The added value of mixed methods research. Parent Education and Counseling, 82, 455-464.
58.
WeickK. E. (1979). Social psychology of organizing. Boston, MA: McGraw-Hill.
59.
WhiteD. (2000). Consumer and community participation: A reassessment of process, impact and value. In AlbrechtG. L.FitzpatrickR.ScrimshawS. C. (Eds.), Handbook of social studies in health and medicine (pp. 465-480). London, England: SAGE.
60.
WHO (1978). Alma Ata Declaration. Copenhagen, Denmark: WHO Regional Office for Europe.
61.
WitzA.AnnandaleE. (2006). The challenge of nursing. In KelleherD.GabeJ.WilliamsG. (Eds.), Challenging medicine (2nd ed., pp. 24-39). London, England: Routledge.
62.
WrightM. T.BlockM.von UngerH. (2008). Partizipation in der Zusammenarbeit zwischen Zielgruppe, Projekt und Geldgeber [Participation in the cooperation between target group, project and sponsor]. Das Gesundheitswesen, 70, 748-754.
