Department of Public Health

Research Centre for Patient Involvement

 Department of Public Health Research Centre for Patient Involvement Research Focus Patient Partners in Research Patient and Public Involvement Guidance

Patient and Public Involvement Guidance

Illustration of Research Focus

How can patient partners be involved in the research process? As a starting point a research group within the ResCenPI has prepared this introductory page for researchers new to patient and public involvement (PPI). It provides an overview of some of the most important concepts and examples of literature exploring these concepts. 

Overview of Important Concepts

Patient and Public Involvement

Key terms

Involvement; Engagement; Participation.

Literature

  • A Researcher’s Guide to Patient and Public Involvement: https://oxfordbrc.nihr.ac.uk/wp-content/uploads/2017/03/A-Researchers-Guide-to-PPI.pdf
  • Smits DW, van Meeteren K, Klem M, Alsem M, Ketelaar M. Designing a tool to support patient and public involvement in research projects: The Involvement Matrix. Research involvement and engagement. 2020; 6, 30. DOI.org/10.1186/s40900-020-00188-4 
  • Baines RL, Regan de Bere S. Optimizing patient and public involvement (PPI): Identifying its "essential" and "desirable" principles using a systematic review and modified Delphi methodology. Health Expect. 2018 Feb; 21 (1): 327-335. DOI: 10.1111/hex.12618
  • Turk A, Boylan A, Locock LA. Researcher’s Guide to Patient and Public Involvement. A guide based on the experiences of health and medical researchers, patients and members of the public. University of Oxford. oxfordbrc.nihr.ac.uk/wp-content/uploads/2017/03/A-Researchers-Guide-to-PPI.pdf
  • Beresford P, Russo J. Patient and public involvement in research. In J North (Author), E Nolte, S Merkur, A Anell (Eds.). Achieving Person-Centred Health Systems: Evidence, Strategies and Challenges (European Observatory on Health Systems and Policies, pp. 145-172). 2020. Cambridge: Cambridge University Press. DOI.org/10.1017/9781108855464.009 
  • Biddle MSY, Gibson A, Evans D. Attitudes and approaches to patient and public involvement across Europe: A systematic review. Health Soc Care Community. 2021 Jan; 29 (1): 18-27. DOI: 10.1111/hsc.13111. Epub 2020 Jul 23. PMID: 32705752
  • Greenhalgh T, Hinton L, Finlay T, Macfarlane A, Fahy N, Clyde B, Chant A. Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot. Health Expect. 2019 Aug;22(4):785-801. DOI: 10.1111/hex.12888. Epub 2019 Apr 22
  • Kroghstrup, H. Brugerinvolvering i evaluering og forskning, p. 15-29. I: Brugerinvolvering i evaluering og forskning. Metoder og formål. Hans Reitzels Forlag. 1. udgave, 1. oplag. 2020
  • Rogers M, Bethel A, Boddy K. Development and testing of a medline search filter for identifying patient and public involvement in health research. Health Info Libr J. 2017 Jun; 34 (2): 125-133. DOI: 10.1111/hir.12157
  • Public and Patient Engagement. PCORI: www.pcori.org/about-us/our-programs/engagement/public-and-patient-engagement
  • What is public involvement in research? www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/

Involvement

Key Terms

Participation; Collaboration; Consultation; Partnership; Patient-led research; Patient-centred care; Shared Decision Making; Co-creation; Co-production; Co-design.

Literature

  • Abma TA, Nierse CJ, Widdershoven GA. Patients as partners in responsive research: methodological notions for collaborations in mixed research teams. Qualitative Health Research. 2009; 19, 401-415
  • Ahmad N et al. Person-centred care: from ideas to action. Bringing together the evidence on shared decision making and self-management support. 2014; The Health Foundation: www.health.org.uk/sites/default/files/PersonCentredCareFromIdeasToAction.pdf
  • Health Canada Policy Toolkit for Public Involvement in Decision Making: cihr-irsc.gc.ca/e/45851.html
  • Hawkins J, Madden K, Fletcher A, Midgley L, Grant A, Cox G, Moore L, Campbell R, Murphy S, Bonell C, White J. Development of a framework for the co-production and prototyping of public health interventions. BMC Public Health. 2017; 4:17(1): 689. DOI: 10.1186/s12889-017-4695-8
  • Voorberg, VH et al. A Systematic Review of Co-Creation and Co-Production: Embarking on the social innovation journey. Public Management Review. 2015; 17: 9, 1333-1357, DOI: 10.1080/14719037.2014.930505
  • Guidance on co-producing a research project. April 2021. National Institute for Health Research: www.learningforinvolvement.org.uk/wp-content/uploads/2021/04/NIHR-Guidance-on-co-producing-a-research-project-April-2021.pdf
  • Leask CF, Sandlund M, Skelton DA et al. Framework, principles and recommendations for utilising participatory methodologies in the co-creation and evaluation of public health interventions. Res Involv Engagem. 2019; 5: 2. DOI.org/10.1186/s40900-018-0136-9
  • Bovaird T, Loeffler E. From Engagement to Co-production: The Contribution of Users and Communities to Outcomes and Public Value. Voluntas. 2012; 23, 1119-1138. DOI.org/10.1007/s11266-012-9309-6
  • Batalden M, Batalden P, Margolis P, Seid M, Armstrong G, Opipari-Arrigan L, Hartung H. Coproduction of healthcare service. BMJ Qual Saf. 2016, 25: 7, 509-17, DOI: 10.1136/bmjqs-2015-004315
  • Pestoff V. Collective Action and the Sustainability of Co-Production. Public Management Review. 2014; 16: 3, 383-401, DOI: 10.1080/14719037.2013.841460
  • What makes co-production different? The ladder of co-production. No date. Social Care Institute for Excellence: www.thinklocalactpersonal.org.uk/co-production-in-commissioning-tool/co-production/In-more-detail/what-makes-co-production-different/
  • Kobro LU et al. (red.). La oss gjøre det sammen! Håndbok i lokal samskapende sosial innovasjon. 2018. Høgskolen i SørøstNorge/Senter for sosialt entreprenørskap og samskapende sosial innovasjon. Norge
  • Nabatchi T et al. Varieties of Participation in Public Services: The Who, When, and What of Coproduction. Public Administration Review. 2017; 77:5, 766-776. DOI.org/10.1111/puar.12765
  • Tortzen A. Samskabelse af velfærd – muligheder og faldgruber. 2019. Hans Reitzels Forlag, København
  • Andersen LL, Espersen HHE. Samskabelse, samproduktion og partnerskaber – teoretiske perspektiver. 2017; Socialstyrelsen    

Types and Roles

Key terms

Communicating; Listening; Consulting; Engaging; Partnering; Collaboration Continuum; Low level; High level; The expert; The creative outsider; The free challenger; The bridger; The motivator; The passive presence.

Literature

Impact of PPI

Key terms

Impact; Effect.

Literature

  • Staley K. 'Is it worth DOIng?' Measuring the impact of patient and public involvement in research. Res Involv Engagem. 2015, 31; 1: 6. DOI: 10.1186/s40900-015-0008-5
  • Crocker JC, Boylan AM, Bostock J, Locock L. Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study. Health Expect. 2017, Jun; 20 (3): 519-528. DOI: 10.1111/hex.12479
  • Skovlund PC, Nielsen BK, Thaysen HV, Schmidt H, Finset A, Hansen KA, Lomborg K. The impact of patient involvement in research: a case study of the planning, conduct and dissemination of a clinical, controlled trial. Res Involv Engagem. 2020, Jul 19; 6: 43. DOI: 10.1186/s40900-020-00214-5
  • Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R. A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient. 2014; 7 (4): 387-95. DOI: 10.1007/s40271-014-0065-0. 
  • Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014, Oct;17 (5): 637-50. DOI: 10.1111/j.1369-7625.2012.00795.x
  • Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: a systematic review. Int J Qual Health Care. 2012, Feb; 24 (1): 28-38. DOI: 10.1093/intqhc/mzr066
  • The Public and Patient Engagement Evaluation Tool (PPEET). Health Sciences, Public & Patient Engagement, Centre for Health Economics and Policy Analysis, McMaster University, Ontario, Canada: ppe.mcmaster.ca/our-products/public-patient-engagement-evaluation-tool
Revised 02.01.2024
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Web team at Health