Implementing Patient and Carer Participation in Self-Care and Co-Care in Sweden: Policy, Practice and the Future of Person-Centred Care

  • John Øvretveit
  • Eskil Degsell
Part of the Organizational Behaviour in Healthcare book series (OBHC)


In this chapter we present how Sweden has conceptualized patient-, citizen- and carer- engagement and participation at different levels: (a) in formulating policy for health and healthcare, (b) in decisions and planning the overall structure of a healthcare system, including the siting of services, (c) in designing the organization of care at a service level, (d) in planning and taking part in their own individual care and (e) in providing information about outcomes of care and experiences of care. The model is based on co-care and enables self-care to reduce the widening gaps between needs and supply and between cost and affordability. It also mobilizes certain changes and more use of modern change sciences to help to move healthcare towards the more person-centred services represented by self-care and co-care approaches.


Co-care Self-care Patient citizen and carer engagement Healthcare policy Healthcare system Healthcare organization Individual care 


  1. AHRQ. 2017. Tool 1D: Business Case Form, from Accessed 18 Feb 2018.
  2. ———. 2018. Return on Investment Estimation, (in Toolkit for Using the AHRQ Quality Indicators). Accessed 18 Feb 2018.
  3. Alexander, J.A., L.R. Hearld, J.N. Mittler, and J. Harvey. 2012. Patient–physician role relationships and patient activation among individuals with chronic illness. Health Services Research 47: 1201–1223. Scholar
  4. Batalden, P.B., and P.K. Stoltz. 1993. A framework for the continual improvement of health care. Joint Commission Journal on Quality and Patient Safety 19: 424–452.Google Scholar
  5. Da Silva, D. 2012. Helping people share decision a review of evidence considering whether shared decision making is worthwhile. London: The Health Foundation.Google Scholar
  6. Degsell, E. 2018. A model for co-care and the learning health system, available from Eskil Degsell, Patient representative for liaison co-care and patient centred care and researcher. LIME/MMC, Tomtebodavägen 18A. Karolinska Institutet, Stockholm 17177, Sweden.Google Scholar
  7. Degsell, E., and Øvretveit. 2018. Patient evaluation of co-care survey (PECS). Available from MMC, Karolinska Institutet, Stockholm.Google Scholar
  8. Docteur, E., and A. Coulter. 2012. Patient-centeredness in Sweden’s health system—An external assessment and six steps for progress. Stockholm: Swedish Agency for Health and Care Services (Vårdanalys).Google Scholar
  9. Fallberg, L., and J. Øvretveit. 2003. Introduction to patient ombudsmen schemes in Europe. Chap. 1 in Protecting Patient’s Rights?, ed. S. Mackenney and L. Fallberg. Oxford: Radcliffe Medical Press.Google Scholar
  10. Frampton, S.B., S. Guastello, L. Hoy, M. Naylor, S. Sheridan, and M. Johnston-Fleece. 2016. Harnessing evidence and experience to change culture: A guiding framework for patient and family engaged care. Discussion Paper, National Academy of Medicine, Washington, DC. pdf.
  11. Fumagalli, L.P., G. Radaelli, E. Lettieri, P. Bertele’, and C. Masella. 2015. Patient empowerment and its neighbours: Clarifying the boundaries and their mutual relationships. Health Policy 119: 384–394.CrossRefGoogle Scholar
  12. Genia. 2018. Bromma, Sweden. Accessed 16 May 2018.
  13. Hibbard, J.H., and E. Mahoney. 2010. Toward a theory of patient and consumer activation. Patient Education and Counseling 78 (3): 377–381. Epub 2010 Feb 25.CrossRefGoogle Scholar
  14. Hvitfeldt, H., C.A. Carli, E.C. Nelson, et al. 2009. Feed-forward systems for patient participation and provider support: Adoption results from the original US context to Sweden and beyond. Quality Management in Health Care 18: 247–256.CrossRefGoogle Scholar
  15. INVOLVE. 2012. INVOLVE: Briefing notes for researchers: Public involvement in NHS, public health and social care research. National Institute for Health Research, Hamphire UK, February. Accessed 1 June 2018.
  16. Kent, D.M., and R.A. Hayward. 2007. Limitations of applying summary results of clinical trials to Langley G, Nolan K, Nolan T, Norman C, Provost L. The Improvement Guide: A Practical Approach to Enhancing Organizational Performance. San Francisco: Jossey-Bass, 1996.Google Scholar
  17. Langley, G.J., K.M. Nolan, T.W. Nolan, et al. 1996. The improvement guide: A practical approach to enhancing organizational performance. San Francisco: Jossey-Bass.Google Scholar
  18. Lima, A., et al. 2016. Effectiveness of an intervention to improve diabetes self-management on clinical outcomes in patients with low educational level. Gaceta Sanitaria 2017 31 (1): 40–47. Scholar
  19. Longtin, Y., H. Sax, L. Leape, S. Sheridan, L. Donaldson, and D. Pittet. 2010. Patient participation: Current knowledge and applicability to patient safety. Mayo Clinic Proceedings 85 (1): 53–62. Scholar
  20. Michie, S., M. Richardson, M. Johnston, C. Abraham, J. Francis, W. Hardeman, M.P. Eccles, J. Cane, and C.E. Wood. 2013. The behavior change technique taxonomy (v1) of 93 hierarchically clustered techniques: Building an international consensus for the reporting of behavior change interventions. Annals of Behavioral Medicine 46 (1): 81–95. Scholar
  21. Nelson, E.C., M. Dixon-Woods, P.B. Batalden, K. Homa, A.D. Van Citters, T.S. Morgan, E. Eftimovska, E.S. Fisher, J. Ovretveit, W. Harrison, C. Lind, and S. Lindblad. 2016. Patient focused registries can improve health, care, and science. BMJ 354: i3319. (Published 1 July 2016).CrossRefGoogle Scholar
  22. Norman, N., and K. Eva. 2010. Diagnostic error in clinical reasoning. Medical Education 44: 94–100. Scholar
  23. OECD/European Observatory on Health Systems and Policies. 2017. Sweden: Country Health Profile 2017, State of Health in the EU, OECD Publishing, Paris/European Observatory on Health Systems and Policies, Brussels.
  24. Øvretveit, J. 2009. Does improving quality save money? A review of evidence of which improvement to quality reduce costs for health service providers. London: The Health Foundation.;
  25. ———. 2012. Do changes to patient-provider relationships improve quality and save money? A review of evidence. London: The Health Foundation.
  26. ———. 2017. Digital technologies supporting person-Centered integrated care. International Journal of Integrated Care 17 (4): 6. Scholar
  27. Øvretveit, J., C. Keller, H. Hvitfeldt Forsberg, A. Essén, S. Lindblad, and M. Brommels. 2013. Continuous innovation: The development and use of the Swedish rheumatology register to improve the quality of arthritis care. International Journal for Quality in Health Care 25 (2): 118–124. Scholar
  28. Øvretveit, J., L. Zubkoff, E. Nelson, S. Frampton, J. Lehmann Knudsen, and E. Zimlichman. 2017. Using patient-reported outcome measurement to improve patient care. International Journal for Quality in Health Care 29 (6): 874–879.CrossRefGoogle Scholar
  29. Patients like me. 2018. A chance to change the future of personalized health. Accessed 11 May 2018.
  30. Powell, B., T. Waltz, M. Chinman, L. Damschroder, J. Smith, M. Matthieu, E. Proctor, and J. Kirchner. 2015. A refined compilation of implementation strategies: Results from the expert recommendations for implementing change (ERIC) project. Implementation Science 10: 21. Scholar
  31. RWJF. 2018. Building a Culture of Health, from Robert Wood Johnson Foundation. Accessed 1 June 2018.
  32. Sabadosa, K.A., and P.B. Batalden. 2014. The interdependent roles of patients, families and professionals in cystic fibrosis: A system for the coproduction of healthcare and its improvement. BMJ Quality and Safety 23: i90–i94.CrossRefGoogle Scholar
  33. Sullivan, S., J. Mauskopf, F. Augustovski, J. Caro, K. Lee, M. Minchin, E. Orlewska, P. Penna, J. Barrios, and W. Shau. 2014. 2012 budget impact analysis—Principles of good practice: Report of the ISPOR 2012 budget impact analysis good practice II task force. Value in Health 17: 5–14.CrossRefGoogle Scholar
  34. Vahdat, S., L. Hamzehgardeshi, S. Hessam, and Z. Hamzehgardeshi. 2014. Patient involvement in health care decision making: A review. Iranian Red Crescent Medical Journal 16 (1): e12454. Published online 2014 Jan 5.CrossRefGoogle Scholar
  35. Vardanalysis. 2017. From the patient’s perspective. Stockholm. Accessed 1 June 2018.
  36. Ziebland, S., A. Coulter, J. Calabrese, and L. Locock, eds. 2013. Understanding and using health experiences: Improving patient care. Oxford: Oxford university press.Google Scholar

Copyright information

© The Author(s) 2019

Authors and Affiliations

  • John Øvretveit
    • 1
  • Eskil Degsell
    • 1
  1. 1.Karolinska InstituteStockholmSweden

Personalised recommendations