Who wants to be involved in health care decisions? Comparing preferences for individual and collective involvement in England and Sweden

BackgroundPatient and public involvement (PPI) is framed as positive for individuals, the health system, public health, as well as for communities and society as a whole. We investigated whether preferences for PPI differed between two countries with Beveridge type health systems–Sweden and England. We measured willingness to be involved in individual treatment decisions and in decisions about the organization and provision of local health and social care services.MethodsThis was a comparative cross-sectional study of the general population’s preferences. Together, the two samples included 3125 respondents; 1625 in England and 1500 in Sweden. Country differences were analysed in a multinomial regression model controlling for gender, age and educational attainment.ResultsOverall, 68% of respondents wanted a passive patient role and 44% wanted to be involved in local decisions about organization and provision of services. In comparison with in Sweden, they were in England less likely to want a health professional such as a GP or consultant to make decisions about their treatment and also more likely to want to make their own decisions. They were also less likely to want to be involved in local service development decisions. An increased likelihood of wanting to be involved in organizational decision-making was associated with individuals wanting to make their own treatment decisions. Women were less likely to want health professionals to make decisions and more likely to want to be involved in organizational decisions.ConclusionsAn effective health system that ensures public health must integrate an effective approach to PPI both in individual treatment decisions and shaping local health and social care priorities. To be effective, involvement activities must take in to account the variation in the desire for involvement and the implications that this has for equity. More work is needed to understand the relationship between the desire to be involved and actually being involved, but both appear related to judgements of the impact of involvement on health care decisions.

[1]  Neeraj Arora,et al.  Patient preferences for medical decision making: who really wants to participate? , 2000, Medical care.

[2]  Richard Simmons,et al.  User Power: the participation of users in public services , 2004 .

[3]  D. Harrop,et al.  Deprescribing interventions and their impact on medication adherence in community-dwelling older adults with polypharmacy: a systematic review , 2019, BMC Geriatrics.

[4]  Richard Baker,et al.  Older people's preferences for involvement in their own care: a qualitative study in primary health care in 11 European countries. , 2007, Patient education and counseling.

[5]  P. Mazzone.  Beyond the usual suspects. , 2012, Journal of thoracic oncology : official publication of the International Association for the Study of Lung Cancer.

[6]  M. Fredriksson.  Is patient choice democratizing Swedish primary care? , 2013, Health policy.

[7]  Are health problems systemic? Politics of access and choice under Beveridge and Bismarck systems , 2010, Health Economics, Policy and Law.

[8]  Susan E. Morgan,et al.  Communicating about gifts of life: the effect of knowledge, attitudes, and altruism on behavior and behavioral intentions regarding organ donation , 2002 .

[9]  P. Rosén.  Public dialogue on healthcare prioritisation. , 2006, Health policy.

[10]  A. Coulter,et al.  Where are the patients in decision making about their own care , 2008 .

[11]  S. Yeager,et al.  Preliminary Assessment of Format-Specific Central Tendency and Leniency Error in Summated Rating Scales , 1982 .

[12]  D M Trandel-Korenchuk,et al.  Patient participation in decision making. , 1982, The Nurse practitioner.

[13]  G. Martin,et al.  Inclusive public participation in health: Policy, practice and theoretical contributions to promote the involvement of marginalised groups in healthcare. , 2015, Social science & medicine.

[14]  J. Tritter,et al.  Revolution or evolution: the challenges of conceptualizing patient and public involvement in a consumerist world , 2009, Health expectations : an international journal of public participation in health care and health policy.

[15]  Colin Tysall,et al.  A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities , 2014, The Patient - Patient-Centered Outcomes Research.

[16]  L. Fraenkel,et al.  Participation in Medical Decision Making: The Patients' Perspective , 2007, Medical decision making : an international journal of the Society for Medical Decision Making.

[17]  Catherine Needham.  Globalisation, Markets and Healthcare Policy: Redrawing the Patient as a Consumer , 2010 .

[18]  U. Winblad,et al.  Meeting Rising Public Expectations : The changing roles of patients/citizens , 2009 .

[19]  Nancy Kraetschmer,et al.  Do people want to be autonomous patients? Preferred roles in treatment decision‐making in several patient populations , 2007, Health expectations : an international journal of public participation in health care and health policy.

[20]  L. Forbat,et al.  Patient and public involvement: models and muddles. , 2009, Journal of clinical nursing.

[21]  Nancy Kraetschmer,et al.  How does trust affect patient preferences for participation in decision‐making? , 2004, Health expectations : an international journal of public participation in health care and health policy.

[22]  R. Førde,et al.  End-of-life care communications and shared decision-making in Norwegian nursing homes - experiences and perspectives of patients and relatives , 2015, BMC Geriatrics.

[23]  J. Benbassat,et al.  Patients' preferences for participation in clinical decision making: a review of published surveys. , 1998, Behavioral medicine.

[24]  Andy Gibson,et al.  Theoretical directions for an emancipatory concept of patient and public involvement , 2012, Health.

[25]  A. Anell.  Choice and privatisation in Swedish primary care , 2010, Health Economics, Policy and Law.

[26]  A. Thompson,et al.  The meaning of patient involvement and participation in health care consultations: a taxonomy. , 2007, Social science & medicine.

[27]  Alan D. Lopez,et al.  The Global Burden of Disease Study , 2003 .

[28]  Angela Coulter,et al.  What do patients and the public want from primary care? , 2005, BMJ : British Medical Journal.

[29]  E. Nolte,et al.  What is the evidence base for public involvement in health‐care policy?: results of a systematic scoping review , 2015, Health expectations : an international journal of public participation in health care and health policy.

[30]  W. Levinson,et al.  Not all patients want to participate in decision making , 2005, Journal of General Internal Medicine.

[31]  J. van der Zee,et al.  Bismarck or Beveridge: a beauty contest between dinosaurs , 2007, BMC Health Services Research.

[32]  R. Osborn,et al.  International Profiles of Health Care Systems: Australia, Canada, Denmark, England, France, Germany, Japan, Iceland, Italy, the Netherlands, New Zealand, Norway, Sweden, Switzerland, and the United States , 2012 .

[33]  Josephine Ocloo,et al.  From tokenism to empowerment: progressing patient and public involvement in healthcare improvement , 2016, BMJ Quality & Safety.

[34]  Karsten Vrangbæk,et al.  Nordic Health Care Systems: Recent Reforms and Current Policy Challenges , 2009 .

[35]  C. Drossaert,et al.  Patient participation in decisions about disease modifying anti-rheumatic drugs: a cross-sectional survey , 2014, BMC Musculoskeletal Disorders.

[36]  Angela Coulter,et al.  The European Patient Of The Future , 2003 .

[37]  Sarah Thomson,et al.  International profiles of health care systems, 2012 , 2012 .

[38]  Cathy Schoen,et al.  Mirror, Mirror on the Wall, 2014 Update: How the U.S. Health Care System Compares Internationally , 2014 .

[39]  Jenny Donovan,et al.  'The public is too subjective': public involvement at different levels of health-care decision making. , 2002, Social science & medicine.

[40]  C. Charles,et al.  Lay participation in health care decision making: a conceptual framework. , 1993, Journal of health politics, policy and law.

[41]  Ashutosh Kumar Singh,et al.  Global, regional, and national life expectancy, all-cause mortality, and cause-specific mortality for 249 causes of death, 1980–2015: a systematic analysis for the Global Burden of Disease Study 2015 , 2016, The Lancet.

[42]  M. Diani.  :State and Civil Society in Northern Europe: The Swedish Model Reconsidered , 2008 .

[43]  J. Dixon,et al.  Public involvement in health care , 2004, BMJ : British Medical Journal.