Hostname: page-component-cd9895bd7-dk4vv Total loading time: 0 Render date: 2024-12-23T08:23:30.280Z Has data issue: false hasContentIssue false
  • English
  • Français

Getting involved: the extent and impact of patient and public involvement in the Swedish health system

Published online by Cambridge University Press:  03 May 2019

Mio Fredriksson  and
Jonathan Tritter
Mio Fredriksson*
Affiliation:
Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden Department of Sociology and Policy, Aston University, Birmingham, UK
Jonathan Tritter
Affiliation:
Department of Sociology and Policy, Aston University, Birmingham, UK
*
*Correspondence to. Email: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Patient and public involvement (PPI) is framed as beneficial for individuals and for the health system. However, little is known about the extent of involvement, or of its impact. Based on data from Sweden, we show that apart from voting in regional elections (76%), more people reported involvement as individual patients (23%) than part of collective activities (5%) or activities relating to a citizen perspective (4%). There was no correlation between how many people participated and the estimated impact – which was generally low. More extensive involvement is thus not linked to the potential to influence decisions. We argue that to achieve the benefits associated with PPI it is crucial to understand more about people's motivation for being involved and what underlies low estimates of impact. This requires a more systematic approach to involvement, how it is evaluated and its results communicated to participants and the society. We also argue that a future challenge for the Swedish health system, and for other similar health systems, is to support long-term collective involvement in the midst of growing individualization of health services and involvement opportunities primarily intended for patients.

Keywords

Involvement impactparticipationpatient and public involvementSweden
Type
Articles
Information
Health Economics, Policy and Law , Volume 15 , Issue 3 , July 2020 , pp. 325 - 340
Copyright
Copyright © Cambridge University Press 2019

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Amnå, E (2006) Playing with fire? Swedish mobilization for participatory democracy. Journal of European Public Policy 13, 587–606.CrossRefGoogle Scholar
Anderson, W, Florin, D, Gillam, S and Mountford, L (2002) Every Voice Counts. Primary Care Organisations and Public Involvement. London: King's Fund.Google Scholar
Anell, A, Glenngård, AH and Merkur, S (2012) Sweden health system review. Health Systems in Transition 14, 1–159.Google ScholarPubMed
Arvidsson, C, Zambon, F and Östergren, P-O (2015) Taking A Participatory Approach to Development and Better Health. Examples From the Regions of Health Network. Copenhagen, Denmark: WHO Regional Office for Europe, Region Skåne, Regions for Health Network.Google Scholar
Beresford, P (2013) Beyond the Usual Suspects. London: Shaping Our Lives.Google Scholar
Bergström, A (2012) Medborgardemokrati i Skåne [Citizen Democracy in Skåne]. Göteborg: SOM-Institutet.Google Scholar
Birchall, J and Simmons, R (2004) User Power. The Participation of Users in Public Services. London, UK: National Consumer Council.Google Scholar
Brannan, T, John, P and Stoker, G (2006) Active citizenship and effective public services and programmes: How can we know what really works? Urban Studies 43, 993–1008.CrossRefGoogle Scholar
Brett, J, Staniszewska, S, Mockford, C, Herron-Marx, S, Hughes, J, Tysall, C and Suleman, R (2014 a) A systematic review of the impact of patient and public involvement on service users, researchers and communities. The Patient – Patient-Centered Outcomes Research 7, 387–395.CrossRefGoogle ScholarPubMed
Brett, J, Staniszewska, S, Mockford, C, Herron-Marx, S, Hughes, J, Tysall, C and Suleman, R (2014 b) Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expectations 17, 637–650.CrossRefGoogle ScholarPubMed
British Medical Association (BMA) (2015) Patient and Public Involvement: a Tool Kit for GPs. London, UK: British Medical Association.Google Scholar
Busse, R and Blümel, M (2014) Germany health system review. Health Systems in Transition 16, 1–296.Google ScholarPubMed
Charles, C and DeMaio, S (1993) Lay participation in health care decision making: a conceptual framework. Journal of Health Politics Policy and Law 18, 881–904.CrossRefGoogle ScholarPubMed
Christiaens, W, Kohn, L, Léonard, C, Denis, A, Daue, F and Cleemput, I (2012) Models for citizen and patient involvement in health care policy – Part I: Exploration of their feasibility and acceptability (No. KCE Reports 195C). Belgian Health Care Knowledge Centre (KCE), Brussels.Google Scholar
Coulter, A (2005) What do patients and the public want from primary care? BMJ 331, 1199–1201.CrossRefGoogle ScholarPubMed
Coulter, A (2006) Patient engagement: Why is it important? In Anderson, E, Tritter, J and Wilson, R (eds), Healthy Democracy: The Future of Involvement in Health and Social Care. London: Involve and NHS National Centre for Involvement, pp. 27–36.Google Scholar
Coulter, A (2011) Engaging Patients in Healthcare. Maidenhead, Berkshire, England: McGraw Hill/Open University Press.Google Scholar
Coulter, A and Ellins, J (2006) Patient-Focused Interventions. A Review of the Evidence. London: Picker Institute Europe, The Health Foundation.Google Scholar
Crawford, M and Thelwall, S (2003) User Involvement in Change Management: A Review of the Literature. Report to the National Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO).Google Scholar
de Freitas, C and Martin, G (2015) Inclusive public participation in health: policy, practice and theoretical contributions to promote the involvement of marginalised groups in healthcare. Social Science & Medicine 135, 31.CrossRefGoogle Scholar
Demokratiutredningen, (2016) Låt fler forma framtiden: betänkande. Stockholm: Wolters Kluwer.Google Scholar
Dent, M and Pahor, M (2015) Patient involvement in Europe – a comparative framework. Journal of Health Organization and Management 29, 546–555.CrossRefGoogle ScholarPubMed
Docteur, E and Coulter, A (2012) Patient-centeredness in Sweden's Health System: An Assessment and Six Steps for Progress. Solna: Myndigheten för vårdanalys.Google Scholar
European Commission (2013) Flash Eurobarometer 373. Europeans' engagement in participatory democracy. Available at http://ec.europa.eu/commfrontoffice/publicopinion/flash/fl_373_en.pdf.Google Scholar
Florin, D and Dixon, J (2004) Public involvement in health care. BMJ 328, 159–161.CrossRefGoogle ScholarPubMed
Forbat, L, Hubbard, G and Kearney, N (2009) Patient and public involvement: models and muddles. Journal of Clinical Nursing 18, 2547–2554.CrossRefGoogle ScholarPubMed
Forster, R and Kranich, C (2007) [Patient and public involvement in health care – a comparison between recent English and German policies]. Gesundheitswesen 69, 98–104 (Article in German, English abstract).CrossRefGoogle Scholar
Fredriksson, M (2013) Is patient choice democratizing Swedish primary care? Health Policy 111, 95–98.CrossRefGoogle ScholarPubMed
Fredriksson, M and Tritter, J (2017) Disentangling patient and public involvement in healthcare decisions: why the difference matters. Sociology of Health & Illness 39, 95–111.CrossRefGoogle ScholarPubMed
Garcia-Dominic, O, Wray, LA, Treviño, RP, Hernandez, AE, Yin, Z and Ulbrecht, JS (2010) Identifying barriers that hinder onsite parental involvement in a school-based health promotion program. Health promotion practice 11, 703–713.CrossRefGoogle Scholar
Greenland, S, Senn, SJ, Rothman, KJ, Carlin, JB, Poole, C, Goodman, SN and Altman, DG (2016) Statistical tests, P values, confidence intervals, and power: a guide to misinterpretations. European Journal of Epidemiology 31, 337.CrossRefGoogle ScholarPubMed
Haarmann, A (2018) The Evolution and Everyday Practice of Collective Patient Involvement in Europe An Examination of Policy Processes, Motivations, and Implementations in Four Countries. Cham: Springer International Publishing.Google Scholar
Härter, M, Müller, H, Dirmaier, J, Donner-Banzhoff, N, Bieber, C and Eich, W (2011) Patient participation and shared decision making in Germany – history, agents and current transfer to practice. Zeitschrift Fur Evidenz, Fortbildung Und Qualitat Im Gesundheitswesen 105, 263–270.CrossRefGoogle Scholar
Hirschman, AO (1970) Exit, Voice, and Loyalty: Responses to Decline in Firms, Organizations, and States. Cambridge, Mass: Harvard Univ. Press.Google Scholar
Hogg, C (1999) Patients, Power & Politics: From Patients to Citizens. London, Thousand Oaks, Calif: SAGE.Google Scholar
Kofahl, C, Trojan, A, Knesebeck, O and Nickel, S (2014) Self-help friendliness: a German approach for strengthening the cooperation between self-help groups and health care professionals. Social Science & Medicine (1982) 123, 217–225.CrossRefGoogle ScholarPubMed
Lapidus, J (2015) Social Democracy and the Swedish welfare model. Ideational analyses of attitudes towards competition, individualization, privatization. Handelshögskolan vid Göteborgs Universitet.Google Scholar
Lister, M and Pia, E (2008) Citizenship in Contemporary Europe. Edinburgh: Edinburgh University Press.CrossRefGoogle Scholar
Litva, A, Coast, J, Donovan, J, Eyles, J, Shepherd, M, Tacchi, J, Abelson, J and Morgan, K (2002) ‘The public is too subjective’: public involvement at different levels of health-care decision making. Social Science & Medicine 54, 1825–1837.CrossRefGoogle ScholarPubMed
Lowndes, V, Pratchett, L and Stoker, G (2006) Diagnosing and remedying the failings of official participation schemes: the CLEAR framework. Social Policy and Society 5, 281–291.CrossRefGoogle Scholar
Lundell, K, Karjalainen, M and Serup, H (2016) After the merger: do citizens want democratic innovations? Scandinavian Journal of Public Administration 20, 3–31.Google Scholar
Magnussen, J, Vrangbæk, K and Saltman, RB (2009 a) Nordic Health Care Systems: Recent Reforms and Current Policy Challenges. Maidenhead, UK: Open University Press.Google Scholar
Magnussen, J, Saltman, RB and Martinussen, PE (2009 b) Introduction: the Nordic model of health care. In Magnussen, J, Vrangbæk, K and Saltman, RB (eds), Nordic Health Care Systems: Recent Reforms and Current Policy Challenges. Maidenhead, UK: Open University Press, pp. 3–20.Google Scholar
Martin, S and Boaz, A (2000) The modernization and improvement of government and public services: public participation and citizen-centred local government: lessons from the best value and better government for older people pilot programmes. Public Money & Management 20, 47–54.CrossRefGoogle Scholar
Michels, AMB (2011) Innovations in democratic governance-How does citizen participation contribute to a better democracy? International Review of Administrative Sciences 77, 275–293.CrossRefGoogle Scholar
Mockford, C, Staniszewska, S, Griffiths, F and Herron-Marx, S (2012) The impact of patient and public involvement on UK NHS health care: a systematic review. International Journal for Quality in Health Care 24, 28–38.CrossRefGoogle ScholarPubMed
Ocloo, J and Matthews, R (2016) From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Quality & Safety 0, 1–7.Google Scholar
Olsen, GM (2013) What's ‘Left’ in the ‘Garden of Sweden’? International Journal of Health Services 43, 7–30.CrossRefGoogle ScholarPubMed
Peeters, Y and Stiggelbout, AM (2010) Health state valuations of patients and the general public analytically compared: a meta-analytical comparison of patient and population health state utilities. Value Health 13, 306–309.CrossRefGoogle ScholarPubMed
Pierre, J (2009) Reinventing Governance, Reinventing Democracy? Policy and Politics 37, 591.CrossRefGoogle Scholar
Pierre, J and Røiseland, A (2016) Exit and voice in local government reconsidered: a ‘choice revolution’? Public Administration 94, 738–753.CrossRefGoogle Scholar
Rojatz, D and Forster, R (2017) Self-help organisations as patient representatives in health care and policy decision-making. Health Policy 121, 1047–1052.CrossRefGoogle ScholarPubMed
Rosén, P (2006) Public dialogue on healthcare prioritisation. Health Policy 79, 107–116.CrossRefGoogle ScholarPubMed
Sawicki, P and Bastian, H (2008) German health care: a bit of Bismarck plus more science. BMJ 337, a1997.CrossRefGoogle ScholarPubMed
Skålén, C, Nordgren, L and Annerbäck, E-M (2016) Patient complaints about health care in a Swedish County: characteristics and satisfaction after handling. Nursing Open 3, 203–211.CrossRefGoogle Scholar
Staniszewska, S, Herron-Marx, S and Mockford, C (2008) Measuring the impact of patient and public involvement: the need for an evidence base. International Journal for Quality in Health Care 20, 373–374.CrossRefGoogle ScholarPubMed
Stewart, E (2016) Publics and Their Health Systems. Basingstoke, UK: Palgrave Macmillan.CrossRefGoogle Scholar
The Swedish Agency for Health and Care Services Analysis (2016) Vården ur befolkningens perspektiv 2016 – en jämförelse mellan Sverige och tio andra länder [Healthcare from the citizen's perspective – a comparison between Sweden and ten other countries]. Based on “The Commonwealth Fund's 2016 International Health Policy Survey of Adults in 11 countries”.Google Scholar
Toth, F (2016) Classification of healthcare systems: Can we go further?Heatlh Policy 120, 535–543.Google Scholar
Trägårdh, L (2007) State and Civil Society in Northern Europe: The Swedish Model Reconsidered. Oxford, New York: Berghahn Books.CrossRefGoogle Scholar
Tritter, JQ (2009) Revolution or evolution: the challenges of conceptualizing patient and public involvement in a consumerist world. Health Expectations 12, 275–287.CrossRefGoogle ScholarPubMed
Urbinati, N and Warren, ME (2008) The concept of representation in contemporary democratic theory. Annual Review of Political Science 11, 387–412.CrossRefGoogle Scholar
van Thiel, G and Stolk, P (2013) Background Paper 8.5. Patient and Citizen Involvement. Available at http://www.who.int/medicines/areas/priority_medicines/BP8_5Stakeholder.pdf.Google Scholar
Warsh, J (2014) PPI: understanding the difference between patient and public involvement. The American Journal of Bioethics 14, 25–26.CrossRefGoogle ScholarPubMed
Wildner, M, den Exter, AP and van der Kraan, WGM (2004) The changing role of the individual in social health insurance systems. In Saltman, RB, Busse, R and Figueras, J (eds), Social Health Insurance Systems in Western Europe. Maidenhead: Open University Press, pp. 248–264.Google Scholar
Winblad, U and Ringard, Å (2009) Meeting rising public expectations: the changing roles of patients and citizens. In Magnussen, J, Vrangbæk, K and Saltman, RB (eds), Nordic Health Care Systems: Recent Reforms and Current Policy Challenges. Maidenhead, UK: Open University Press, pp. 126–150.Google Scholar
Wolf, C, Joye, D, Smith, TEC and Fu, Y-C (eds) (2016) The SAGE Handbook of Survey Methodology. London, UK: Sage.CrossRefGoogle Scholar
Supplementary material: File

Fredriksson and Tritter supplementary material

Tables S1-S2
Download Fredriksson and Tritter supplementary material(File)
File 17.9 KB