{"id":1319,"date":"2026-01-19T09:52:11","date_gmt":"2026-01-19T09:52:11","guid":{"rendered":"https:\/\/sites.exeter.ac.uk\/per\/?p=1319"},"modified":"2026-01-19T09:52:12","modified_gmt":"2026-01-19T09:52:12","slug":"understanding-uncertainty-involving-people-with-lived-experience-in-research-into-medical-communication-and-decision-making","status":"publish","type":"post","link":"https:\/\/sites.exeter.ac.uk\/per\/2026\/01\/19\/understanding-uncertainty-involving-people-with-lived-experience-in-research-into-medical-communication-and-decision-making\/","title":{"rendered":"Understanding Uncertainty – Involving People with Lived Experience in Research into Medical Communication and Decision Making"},"content":{"rendered":"\n

In her blog piece, Amy Chinner-Evans draws on recent Patient and Public Involvement and Engagement, which aimed to address uncertainty in medical decision-making. Working with patients with multiple long-term health conditions (MLTCs), her collaboration will inform ongoing research as part of her wider PhD programme. <\/strong><\/p>\n\n\n\n

Amount of award: \u00a3300<\/p>\n\n\n\n

“Medicine is a science of uncertainty and an art of probability\u201d \u2013 Sir William Osler (1849-1919)<\/em> <\/p>\n\n\n\n

Uncertainty is common when making decisions about healthcare. It is recommended that healthcare providers talk about this uncertainty with patients experiencing multiple long-term health conditions (MLTCs) so decisions about healthcare can be made together. However, there is currently a lack of guidance for doctors on how to talk about uncertainty with their patients. There is also a lack of research into what patients and doctors think about discussing uncertainty when making health-related decisions. <\/p>\n\n\n\n

Including\u00a0patient and public involvement (PPI)\u00a0in this research from the start was important to help us\u00a0understand\u00a0what matters to\u00a0people with lived experience of MLTCs\u00a0with regards to discussions about uncertainty as part of healthcare decision making.\u00a0This will help\u00a0refine\u00a0our\u00a0research\u00a0going forwards\u00a0to ensure that we\u00a0focus on areas of\u00a0importance for patients and\u00a0the public.\u00a0<\/strong>It will also help\u00a0identify\u00a0who to involve at each stage\u00a0of the research\u00a0to ensure\u00a0consideration of\u00a0diverse contextual\u00a0influences,\u00a0building\u00a0supportive partnerships to influence change.\u00a0<\/p>\n\n\n\n

Through an online workshop, we aimed to explore what uncertainty means to people with lived experience of MLTCs and who they think might be interested in or affected by this research. I thought it was important to first understand what \u201cuncertainty\u201d means to people who have experience of living with MLTCs day-to-day. Therefore, for the first activity we completed an adapted circle mapping exercise (Robinson, 2024) to explore two questions: <\/p>\n\n\n\n

    \n
  1. What does uncertainty mean\u00a0to you\u00a0in general?\u00a0<\/li>\n<\/ol>\n\n\n\n
      \n
    1. What does uncertainty mean within the context of healthcare?\u00a0<\/li>\n<\/ol>\n\n\n\n
      \"\"
      Figure 1 – Reflections on the meaning of uncertainty following discussions with the group<\/em><\/figcaption><\/figure>\n\n\n\n

      Following a short break, we then moved on to a stakeholder mapping activity (adapted from the Research Excellence Framework (REF) impact toolkit (Tilley et al., 2018) and Improvement Service (n.d.)) to explore who should be involved in this research going forwards to improve its relevance and impact for people with MLTCs and primary care in practice. The PPI members identified range of potential stakeholders and mapped them onto a matrix of interest and influence. <\/p>\n\n\n\n

      Feedback from PPI collaborators about the benefits of participating in this workshop included: <\/p>\n\n\n\n

      \u201cIt gives me the confidence to have a more honest consultation with HCPs” <\/p>\n\n\n\n

      “I could share \u2026 things that I cannot always share” <\/p>\n\n\n\n

      “Brought to my attention the importance of a subject which is fundamental to the clinician and patient relationship” <\/p>\n\n\n\n

      From a researcher perspective, I found this workshop particularly helpful to allow me to centre the voices and experiences of the PPI members in relation to the communication of uncertainty. It was an invaluable opportunity to reflect people\u2019s contrasting experiences and differences in viewpoints e.g. reflections on the dual nature of uncertainty. This was beneficial for the development of my own thinking around the concepts central to my research questions (which really helped to improve my upgrade presentation!) and to guide considerations of who to involve in future study development and dissemination work. <\/p>\n\n\n\n

      I am currently building on this PPI work to develop a qualitative interview study, exploring the experiences and perceptions of the communication of uncertainty for both people with MLTCs and GPs. This is part of a wider PhD programme of work to inform the development of an evidence-based educational intervention to support GPs with the communication of clinical uncertainty as a component of shared decision-making with people with MLTCs. PPI collaborators with lived experience of MLTCs will continue to be involved throughout the design and completion of this work to ensure the research design and outputs remain relevant for this population. <\/p>\n\n\n\n

      With sincere thanks to Alex Aylward (Independent PPIE volunteer), Leon Farmer (PPIE collaborator) Lynn Tatnell (Independent PPIE volunteer), and Anonymous (PPIE collaborator) for their time and feedback as part of this workshop. <\/p>\n\n\n\n

      References:<\/strong>\u00a0<\/p>\n\n\n\n

      Improvement Service. (n.d.).\u00a0Introduction to the Power\/Interest Grid<\/em>. Retrieved 28th May from\u00a0https:\/\/www.improvementservice.org.uk\/business-analysis-framework\/consider-perspectives\/powerinterest-grid<\/a>\u00a0<\/p>\n\n\n\n

      Robinson, L. (2024). Creative data generation methods: The self-portrait and relational map.<\/em> Retrieved 12 December from https:\/\/www.ncrm.ac.uk\/resources\/online\/all\/?id=20836<\/a> <\/p>\n\n\n\n

      Tilley, H., Ball, L., & Cassidy, C. (2018). Research Excellence Framework (REF) impact toolkit. https:\/\/odi.org\/en\/publications\/research-excellence-framework-ref-impact-toolkit\/<\/a>  <\/p>\n","protected":false},"excerpt":{"rendered":"

      In her blog piece, Amy Chinner-Evans draws on recent Patient and Public Involvement and Engagement, which aimed to address uncertainty in medical decision-making. Working with patients with multiple long-term health conditions (MLTCs), her collaboration will inform ongoing research as part of her wider PhD programme. <\/p>\n","protected":false},"author":2305,"featured_media":1329,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[11,7],"tags":[],"acf":[],"yoast_head":"\nUnderstanding Uncertainty - Involving People with Lived Experience in Research into Medical Communication and Decision Making - Public Engagement with Research (PER) at the University of Exeter<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/sites.exeter.ac.uk\/per\/2026\/01\/19\/understanding-uncertainty-involving-people-with-lived-experience-in-research-into-medical-communication-and-decision-making\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Understanding Uncertainty - Involving People with Lived Experience in Research into Medical Communication and Decision Making - Public Engagement with Research (PER) at the University of Exeter\" \/>\n<meta property=\"og:description\" content=\"In her blog piece, Amy Chinner-Evans draws on recent Patient and Public Involvement and Engagement, which aimed to address uncertainty in medical decision-making. 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