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Connections: The Power of Learning Together to Improve Healthcare in the United Kingdom

  • Rachel MatthewsEmail author
  • Stuart Green
  • Rowan Myron
  • Catherine French
  • Susan Barber
  • Dionne Matthew
  • Sandra Jayacodi
  • Jenny Trite
  • Adrian Brown
  • Justin Baker
  • Howard Bluston
  • Ron Grant
  • Jean Straus
  • Richard M Ballerand
  • Maurice Hoffman
  • Fran Husson
  • Laura Fischer
  • Cherelle Augustine
Chapter
Part of the Organizational Behaviour in Healthcare book series (OBHC)

Abstract

Patient, service user, health, and disability advocacy movements contribute to a stronger voice for patients in healthcare in the UK. The National Health Service, introduced in 1948, funded through general taxation, and free at the point of delivery, is less characterized by paternalism now than at its inception. Successive health reforms, policy directives, and legislation support increasing patient autonomy and choice. With the introduction of the internet, changes in technology, and the growth of social media, patient expectation and behaviour are shifting further towards active involvement in decision-making. Translating policy rhetoric and research evidence into meaningful patient and public involvement practice presents challenges to healthcare professionals and researchers. Co-designing opportunities to learn collaboratively offers ways to strengthen practice through the exchange of experiential knowledge and to generate emergent insight. This enhances relational skills that underpin quality improvement, research, and transformation. Patient and service users eloquently articulate the benefits of learning together and model attributes that are essential to improvement efforts.

Keywords

Patient involvement Applied health research Collaborative learning Emergent learning Experiential learning Exchange network Relational skills Quality improvement Leadership Creativity Influencing Learning Systems thinking 

Notes

Acknowledgements

The contributors wish to thank all those in the wider CLAHRC Northwest London community and across the UK who have contributed to the advancement of patient and public engagement and involvement in applied health research, especially Alison Cameron who opened our eyes to co-production and the Exchange Network Co-Design Group: Alison Baker, Alison Cameron, Cherelle Augustine, Ganesh Sathyamoorthy, Jane McGrath, Jenny Trite, Liz Evans, Meerat Kaur, Nicola Kingston, and Nordia James. We mention Margaret Turley for her dedication to championing people with learning disabilities who with Fran Husson masterminded ‘My Medication Passport’; Stan Papoulias and Savi Hensman from NIHR CLAHRC South London for their generous intellectual and peer support. We thank Derek Bell (Director, CLAHRC Northwest London), Julie Reed, and the NIHR CLAHRC Northwest London team, London School of Hygiene and Tropical Medicine research partners, Cicely Marston, Alicia Renedo, Angela Filipe, and Sam Miles. Thanks to Simon Denegri, Jocelyn Cornwell, Samira Ben Omar, Christine Mead, David Gilbert, Mark Doughty, Roma Iskander, Sheila Marsh, Maryrose Tarpey, Helen Hayes, Steven Towndrow, Sandra Howgate, and Lloyd Pestell. Particular thanks to Neil Stillman for his contribution to final revisions, proof reading, and citation support.

Disclaimer

This article presents independent research supported by/in part funded by the National Institute for Health Research (NIHR) under the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) programme for Northwest London. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.

References

  1. Acheson, D. 1998. Inequalities in health: Report of an independent inquiry. Acheson Report, London.Google Scholar
  2. Anderson, E.S., R. Gray, and K. Price. 2017. Patient safety and interprofessional education: A report of key issues from two interprofessional workshops. Journal of Interprofessional Care 31 (2): 154–163.  https://doi.org/10.1080/13561820.2016.1261816.CrossRefGoogle Scholar
  3. Argyris, C. 1982. The executive mind and double-loop learning. Organizational Dynamics 11 (2): 5–22.CrossRefGoogle Scholar
  4. Barber, S., K. Thakkar, V. Marvin, B.D. Franklin, and D. Bell. 2014. Evaluation of my medication passport: A patient-completed aide-memoire designed by patients, for patients, to help towards medicines optimisation. BMJ Open 4 (8): e005608.  https://doi.org/10.1136/bmjopen-2014-005608.CrossRefGoogle Scholar
  5. Barkley, E.F., K.P. Cross, and C.H. Major. 2004. Collaborative learning techniques: A handbook for college faculty. San Francisco: Jossey-Bass.Google Scholar
  6. Barnes, M., and P. Cotterell, eds. 2012. Critical perspectives on user involvement. Bristol: Policy Press.Google Scholar
  7. Batalden, P. 2018. Getting more health from healthcare: Quality improvement must acknowledge patient coproduction—An essay by Paul Batalden. BMJ Clinical Research 362: k3617.Google Scholar
  8. Batalden, M., P. Batalden, P. Margolis, M. Seid, G. Armstrong, L. Opipari-Arrigan, and H. Hartung. 2016. Coproduction of healthcare service. BMJ Quality and Safety 25 (7): 509–517.  https://doi.org/10.1136/bmjqs-2015-004315.CrossRefGoogle Scholar
  9. Beresford, P. 2019. Austerity is denying patients and care service users a voice. The Guardian.Google Scholar
  10. Beresford, P., and F. Branfield. 2012. “Building solidarity, ensuring diversity: Lessons from service users’ and disabled people’s movements”, critical perspectives on user involvement. Bristol: Policy Press.Google Scholar
  11. Berwick, D.M. 2016. Era 3 for medicine and health care. JAMA 315 (13): 1329–1330.  https://doi.org/10.1001/jama.2016.1509.CrossRefGoogle Scholar
  12. Black, D. (Chair). 1980. Report of the working group on inequalities in health. Black Report, London.Google Scholar
  13. Boivin, A., K. Currie, B. Fervers, J. Gracia, M. James, C. Marshall, C. Sakala, S. Sanger, J. Strid, V. Thomas, T. van der Weijden, R. Grol, and J. Burgers. 2010. Patient and public involvement in clinical guidelines: International experiences and future perspectives. Quality & Safety in Health Care 19 (5): e22.  https://doi.org/10.1136/qshc.2009.034835.CrossRefGoogle Scholar
  14. Britto, M.T., S.C. Fuller, H.C. Kaplan, U. Kotagal, C. Lannon, P.A. Margolis, S.E. Muething, P.J. Schoettker, and M. Seid. 2018. Using a network organisational architecture to support the development of learning healthcare systems. BMJ Quality and Safety 27 (11): 937–946.  https://doi.org/10.1136/bmjqs-2017-007219.CrossRefGoogle Scholar
  15. Budrionis, A., and J.G. Bellika. 2016. The learning healthcare system: Where are we now? A systematic review. Journal of Biomedical Informatics 64: 87–92.  https://doi.org/10.1016/j.jbi.2016.09.018.CrossRefGoogle Scholar
  16. Busari, J.O., F.M. Moll, and A.J. Duits. 2017. Understanding the impact of interprofessional collaboration on the quality of care: A case report from a small-scale resource limited health care environment. Journal of Multidisciplinary Healthcare 10: 227–234.  https://doi.org/10.2147/jmdh.S140042.CrossRefGoogle Scholar
  17. Carman, K.L., P. Dardess, M. Maurer, S. Sofaer, K. Adams, C. Bechtel, and J. Sweeney. 2013. Patient and family engagement: A framework for understanding the elements and developing interventions and policies. Health Affairs (Millwood) 32 (2): 223–231.  https://doi.org/10.1377/hlthaff.2012.1133.CrossRefGoogle Scholar
  18. Chang, C.K., R.D. Hayes, G. Perera, M.T.M. Broadbent, A.C. Fernandes, W.E. Lee, M. Hotopf, and R. Stewart. 2011. Life expectancy at birth for people with serious mental illness and other major disorders from a secondary mental health care case register in London. PLoS One 6 (5): e19590.  https://doi.org/10.1371/journal.pone.0019590.CrossRefGoogle Scholar
  19. Chita, S., C. Mead, and M. Fernando. 2012. Long-term conditions: A few words on self-management. Health Service Journal 122 (6312): 28.Google Scholar
  20. Clarke, J., J. Waring, and S. Timmons. 2018. The challenge of inclusive coproduction: The importance of situated rituals and emotional inclusivity in the coproduction of health research projects. Social Policy & Administration 53 (2): 1–16.Google Scholar
  21. Cochrane, A.L. 1972. Effectiveness and efficiency: Random reflections on health services. London: Nuffield Provincial Hospitals Trust.Google Scholar
  22. Community Health Council. n.d. The board of community health councils in wales. http://www.wales.nhs.uk/sitesplus/899/home. Accessed 4 Oct 2018.
  23. Cooksey, D. 2006. A review of UK health research funding (Cooksey review). London: HMSO.Google Scholar
  24. Coulter, A. 2001. The future. In Evidence-based patient choice, ed. A. Edwards and G.J. Elwyn. Oxford: Oxford University Press.Google Scholar
  25. ———. 2011. Engaging patients in healthcare. Maidenhead: Open University Press.Google Scholar
  26. Darling, M., and C. Parry. n.d. Emergent learning: Taking “learning from experience” to a new level. https://thesystemsthinker.com/emergent-learning-taking-learning-from-experience-to-a-new-level/. Accessed 21 Jan 2019.
  27. deBronkart, D. 2018. The patient’s voice in the emerging era of participatory medicine. International Journal of Psychiatry in Medicine 53 (5–6): 350–360.  https://doi.org/10.1177/0091217418791461.CrossRefGoogle Scholar
  28. Denegri, S. 2019. Missing in action—Public involvement and the #NHSLongTermPlan. Simon Denegri’s Lay Review. https://simondenegri.com/2019/01/11/missing-in-action-public-involvement-and-the-nhslongtermplan/.
  29. Department of Health. 1991. The patient’s charter. London.Google Scholar
  30. ———. 2000. The NHS plan: A plan for investment, a plan for reform. London.Google Scholar
  31. ———. 2009. The NHS constitution for England. London: HMSO.Google Scholar
  32. Department of Health Northern Ireland. n.d. Personal and public involvement (PPI). https://www.health-ni.gov.uk/topics/safety-and-quality-standards/personal-and-public-involvement-ppi. Accessed 4 Oct 2018.
  33. Dixon-Woods, M. 2018. Improving quality and safety in health care. London: Harveian Oration 2018, Royal College of Physicians.Google Scholar
  34. Evans, D. 2014. Patient and public involvement in research in the English NHS: A documentary analysis of the complex interplay of evidence and policy. Evidence & Policy 10 (3): 361–377.  https://doi.org/10.1332/174426413X662770.CrossRefGoogle Scholar
  35. Farmer, J., C. Bigby, H. Davis, K. Carlisle, A. Kenny, and R. Huysmans. 2018. The state of health services partnering with consumers: Evidence from an online survey of Australian health services. BMC Health Services Research 18 (1): 628.  https://doi.org/10.1186/s12913-018-3433-y.CrossRefGoogle Scholar
  36. Faulkner, A., D. Crepaz-Keay, J. Kalathil, S. Yiannoullou, F. Singer, N. James, R. Griffiths, E. Perry, D. Forde, and J. Kallevik. 2015. Involvement for influence: 4Pi national involvement standards. London.Google Scholar
  37. Filipe, A., A. Renedo, and C. Marston. 2017. The co-production of what? Knowledge, values, and social relations in health care. PLoS Biology 15 (5): e2001403.  https://doi.org/10.1371/journal.pbio.2001403.CrossRefGoogle Scholar
  38. Francis, R. (Chair). 2013. Report of the Mid Staffordshire NHS Foundation Trust public inquiry executive summary. London.Google Scholar
  39. Gibson, A., J. Welsman, and N. Britten. 2017. Evaluating patient and public involvement in health research: From theoretical model to practical workshop. Health Expectations 20 (5): 826–835.  https://doi.org/10.1111/hex.12486.CrossRefGoogle Scholar
  40. Gilbert, D. 2018. Rethinking engagement. BJPsych Bulletin 29: 1–4.Google Scholar
  41. Godfrey, M.M. 2013. Improvement capability at the front lines of healthcare: Helping through leading and coaching. PhD Thesis, School of Health Sciences, University of Jönköping, University of Jönköping, Sweden.Google Scholar
  42. Green, S.A., L. Evans, R. Matthews, S. Jayacodi, J. Trite, A. Manickam, R. Evered, J. Green, J. Williams, E. Beveridge, C. Parker, and B. Tiplady. 2016. Service user engagement in quality improvement: Applying the national involvement standards. Journal of Mental Health Training Education and Practice 11 (5): 279–285.  https://doi.org/10.1108/jmhtep-02-2016-0011.CrossRefGoogle Scholar
  43. Green, S., E. Beveridge, L. Evans, J. Trite, S. Jayacodi, R. Evered, C. Parker, L. Polledri, E. Tabb, J. Green, A. Manickam, J. Williams, R. Deere, and B. Tiplady. 2018. Implementing guidelines on physical health in the acute mental health setting: A quality improvement approach. International Journal of Mental Health Systems 12 (1): 1.  https://doi.org/10.1186/s13033-018-0179-1.CrossRefGoogle Scholar
  44. Greer, S. 2008. Devolution and health policy in the UK. Eurohealth 14 (4): 22.Google Scholar
  45. Hallsor, S. 2017. A comparison of the early responses to AIDS in the UK and the US. Journal of the Royal Medical Society 24 (1).  https://doi.org/10.2218/resmedica.v24i1.1558.CrossRefGoogle Scholar
  46. Healthwatch. n.d. What we do. https://www.healthwatch.co.uk/what-we-do. Accessed 4 Oct 2018.
  47. Hickey, G. 2018. Co-production from proposal to paper: Share power in five ways. Nature Comment 562: 29–30.CrossRefGoogle Scholar
  48. Hogg, C.N. 2007. Patient and public involvement: What next for the NHS? Health Expectations 10 (2): 129–138.  https://doi.org/10.1111/j.1369-7625.2006.00427.x.CrossRefGoogle Scholar
  49. Illich, I. 1975. The medicalization of life. Journal of Medical Ethics 1 (2): 73–77.CrossRefGoogle Scholar
  50. INVOLVE. n.d. About INVOLVE. http://www.invo.org.uk/about-involve/.
  51. Jubraj, B., and M. Blair. 2015. Use of a medication passport in a disabled child seen across many care settings. BMJ Case Reports. doi:  https://doi.org/10.1136/bcr-2014-208033.Google Scholar
  52. Kennedy, I. 2001. Learning from Bristol: The report of the public inquiry into children’s heart surgery at the Bristol Royal Infirmary 1984–1995. London: HMSO.Google Scholar
  53. Klein, R. 2010. The new politics of the NHS: From creation to reinvention. 6th ed. Oxford: Radcliffe Publishing.Google Scholar
  54. Lucas, B., and H. Nacer. 2015. The habits of an improver: Thinking about learning for improvement in health care. London: The Health Foundation.Google Scholar
  55. Madden, M., and E. Speed. 2017. Beware zombies and unicorns: Toward critical patient and public involvement in health research in a neoliberal context. Frontiers in Sociology 2: 7.  https://doi.org/10.3389/fsoc.2017.00007.CrossRefGoogle Scholar
  56. Malby, B., and M. Anderson-Wallace. 2017. Networks in healthcare: Managing complex relationships. Bradford: Emerald Group Publishing.Google Scholar
  57. Manganiello, M., and M. Anderson. 2011. Back to basics: HIV/AIDS advocacy as a model for catalyzing change. Washington, DC.Google Scholar
  58. Marsick, V.J., M. Volpe, and K.E. Watkins. 1999. Theory and practice of informal learning in the knowledge era. Advances in Developing Human Resources 1 (3): 80–95.  https://doi.org/10.1177/152342239900100309.CrossRefGoogle Scholar
  59. Martin, G.P. 2009. Public and user participation in public service delivery: Tensions in policy and practice. Sociology Compass 3 (2): 310–326.  https://doi.org/10.1111/j.1751-9020.2009.00200.x.CrossRefGoogle Scholar
  60. Matthews, R., and C. Papoulias. 2019. Toward co-productive learning? The exchange network as experimental space. Frontiers in Sociology 4: 36.  https://doi.org/10.3389/fsoc.2019.00036.
  61. McKeown, T. 1976. The role of medicine: Dream, mirage, or Nemesis? London: Nuffield Provincial Hospitals Trust.Google Scholar
  62. Miller, C., and M.S. Bauer. 2014. Excess mortality in bipolar disorders. Current Psychiatry Reports 16 (11): 499.  https://doi.org/10.1007/s11920-014-0499-z.CrossRefGoogle Scholar
  63. Mockford, C., S. Staniszewska, F. Griffiths, and S. Herron-Marx. 2012. The impact of patient and public involvement on UK NHS health care: A systematic review. International Journal for Quality in Health Care 24 (1): 28–38.  https://doi.org/10.1093/intqhc/mzr066.CrossRefGoogle Scholar
  64. Myron, R., C. French, P. Sullivan, G. Sathyamoorthy, J. Barlow, and L. Pomeroy. 2018. Professionals learning together with patients: An exploratory study of a collaborative learning fellowship programme for healthcare improvement. Journal of Interprofessional Care 32 (3): 257–265.  https://doi.org/10.1080/13561820.2017.1392935.CrossRefGoogle Scholar
  65. National Institute for Health Research. 2015. Going the Extra Mile: Improving the nation’s health and wellbeing through public involvement in research. London.Google Scholar
  66. ———. 2016. Briefing document: Collaborations for leadership in applied Health Research and care (CLAHRCs) (v.9). London: NIHR.Google Scholar
  67. 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.  https://doi.org/10.1136/bmj.i3319.CrossRefGoogle Scholar
  68. NHS England. 2014. Five year forward view.Google Scholar
  69. ———. 2019. The NHS long term plan.Google Scholar
  70. Nuffield Trust. n.d. NHS timeline. Nuffield Trust. http://nhstimeline.nuffieldtrust.org.uk/. Accessed 1 Nov 2018.
  71. Ocloo, J., and R. Matthews. 2016. From tokenism to empowerment: Progressing patient and public involvement in healthcare improvement. BMJ Quality and Safety 25 (8): 626–632.  https://doi.org/10.1136/bmjqs-2015-004839.CrossRefGoogle Scholar
  72. Owen, H. 2008. Open space technology: A user’s guide. 3rd ed. San Francisco: Berrett-Koehler Publishers.Google Scholar
  73. Percy Commission. 1957. Report of the Royal Commission on the law relating to mental illness and mental deficiency 1954–1957 (Cmnd 169). London.Google Scholar
  74. Pereira, P, and N. Creary. 2018. Q: The journey so far. London.Google Scholar
  75. Reed, J.E., C. Howe, C. Doyle, and D. Bell. 2018. Successful healthcare improvements from translating evidence in complex systems (SHIFT-evidence): Simple rules to guide practice and research. International Journal for Quality in Health Care 31 (3): 238–244.CrossRefGoogle Scholar
  76. Reeves, S., F. Pelone, R. Harrison, J. Goldman, and M. Zwarenstein. 2017. Interprofessional collaboration to improve professional practice and healthcare outcomes. Cochrane Database of Systematic Reviews (6).  https://doi.org/10.1002/14651858.CD000072.pub3.
  77. Renedo, A., and C. Marston. 2015a. Developing patient-centred care: An ethnographic study of patient perceptions and influence on quality improvement. BMC Health Services Research 15 (1): 122.  https://doi.org/10.1186/s12913-015-0770-y.CrossRefGoogle Scholar
  78. ———. 2015b. Spaces for citizen involvement in healthcare: An ethnographic study. Sociology 49 (3): 488–504.  https://doi.org/10.1177/0038038514544208.CrossRefGoogle Scholar
  79. Revans, R.W. 1982. What is action learning? Journal of Management Development 1 (3): 64–75.CrossRefGoogle Scholar
  80. Ross, R. 1994. The ladder of inference. In The fifth discipline fieldbook: strategies and tools for building a learning organization, 242–246. London: Nicholas Brealey Publishing.Google Scholar
  81. Schramme, T., ed. 2015. New perspectives on paternalism and health care. Basel: Springer International Publishing.Google Scholar
  82. Scottish Health Council. n.d. What we do. http://www.scottishhealthcouncil.org/about_us/what_we_do/what_we_do.aspx#.W7YigntKi70. Accessed 4 Oct 2018.
  83. Seale, B. 2016. Patients as partners: Building collaborative relationships among professionals, patients, carers and communities. London.Google Scholar
  84. Skrabanek, P. 1994. The death of humane medicine. London: The Social Affairs Unit.Google Scholar
  85. Staniszewska, S., S. Denegri, R. Matthews, and V. Monique. 2018. Reviewing progress in public involvement in NIHR research: Developing and implementing a new vision for the future. BMJ Open 8 (7): e017124.CrossRefGoogle Scholar
  86. Terrence Higgins Trust. n.d. How it all began. https://www.tht.org.uk/our-work/about-our-charity/our-history/how-it-all-began. Accessed 13 Nov 2018.
  87. Tritter, J.Q., and A. McCallum. 2006. The snakes and ladders of user involvement: Moving beyond Arnstein. Health Policy 76 (2): 156–168.  https://doi.org/10.1016/j.healthpol.2005.05.008.CrossRefGoogle Scholar
  88. Vygotsky, L.S. 1997. The historical meaning of the crisis in psychology: A methodological investigation. In the collected works of L. S. Vygotsky. Vol. 3. Problems of the theory and history of psychology. New York: Plenum.Google Scholar
  89. Wicks, P., T. Richards, S. Denegri, and F. Godlee. 2018. Patients’ roles and rights in research. BMJ 362: k3193.  https://doi.org/10.1136/bmj.k3193.CrossRefGoogle Scholar
  90. Wiig, S., M. Storm, K. Aase, M.T. Gjestsen, M. Solheim, S. Harthug, G. Robert, N. Fulop, and Quaser team. 2013. Investigating the use of patient involvement and patient experience in quality improvement in Norway: Rhetoric or reality? BMC Health Services Research 13 (1): 206.  https://doi.org/10.1186/1472-6963-13-206.CrossRefGoogle Scholar

Copyright information

© The Author(s) 2019

Authors and Affiliations

  • Rachel Matthews
    • 1
    Email author
  • Stuart Green
    • 1
  • Rowan Myron
    • 1
  • Catherine French
    • 2
  • Susan Barber
    • 1
  • Dionne Matthew
    • 1
  • Sandra Jayacodi
    • 1
  • Jenny Trite
    • 3
  • Adrian Brown
    • 3
  • Justin Baker
    • 3
  • Howard Bluston
    • 4
  • Ron Grant
    • 5
  • Jean Straus
    • 1
  • Richard M Ballerand
    • 5
  • Maurice Hoffman
    • 1
  • Fran Husson
    • 1
  • Laura Fischer
    • 1
  • Cherelle Augustine
    • 1
  1. 1.Collaboration for Leadership in Applied Health Research and CareNational Institute for Health ResearchLondonUK
  2. 2.Royal Brompton and Harefield NHS FT and King’s Health Partners AHSC Partnership ProgrammeLondonUK
  3. 3.Central and North West London NHS Foundation TrustLondonUK
  4. 4.London North West Healthcare NHS TrustLondonUK
  5. 5.Chelsea and Westminster Hospital NHS Foundation TrustLondonUK

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