Building from patient experiences to deliver patient-focused healthcare systems in collaboration with patients: A call to action

Schroeder, Karlin, Bertelsen, Neil, Scott, Jessica, Deane, Katherine ORCID:, Dormer, Laura, Nair, Devika, Elliott, Jim, Krug, Sarah, Sargeant, Ify, Chapman, Hayley and Brooke, Nicholas (2022) Building from patient experiences to deliver patient-focused healthcare systems in collaboration with patients: A call to action. Therapeutic Innovation & Regulatory Science, 56 (5). 848–858. ISSN 2168-4804

[thumbnail of Schroeder_etal_2022_TIaRS]
PDF (Schroeder_etal_2022_TIaRS) - Published Version
Available under License Creative Commons Attribution.

Download (689kB) | Preview


Patients’ experiences of their diagnosis, condition, and treatment (including the impact on their lives), and their experiences surrounding expectations of care, are becoming increasingly important in shaping healthcare systems that meet the evolving needs and priorities of different patient communities over time; this is an ongoing goal of all healthcare stakeholders. Current approaches that capture patient experiences with data are fragmented, resulting in duplication of effort, numerous requests for information, and increased patient burden. Application of patient experience data to inform healthcare decisions is still emerging and there remains an opportunity to align diverse stakeholders on the value of these data to strengthen healthcare systems. Given the collective value of understanding patient experiences across multiple stakeholder groups, we propose a more aligned approach to the collection of patient experience data. This approach is built on the principle that the patients’ experiences are the starting point, and not just something to be considered at the end of the process. It must also be based on meaningful patient engagement, where patients are collaborators and decision makers at each step, thereby ensuring their needs and priorities are accurately reflected. The resulting data and evidence should be made available for all stakeholders, to inform their decision making and healthcare strategies in ways that meet patient priorities. We call for multi-stakeholder collaboration that will deliver healthcare systems and interventions that are better centered around and tailored to patient experiences, and that will help address patients’ unmet needs.

Item Type: Article
Additional Information: Funding Information: Teleconferences and meetings for manuscript development were organized by Patient Focused Medicines Development. Authors did not receive payment for their contribution to development of the manuscript. A document describing the governance structure of Patient Focused Medicines Development (including funding, membership and the decision-making process of the organization) is available at: . Medical writing support was provided by Ify Sargeant of Twist Medical and funded by Patient Focused Medicines Development. Funding Information: JS was an employee of Takeda at the time of manuscript preparation and is now an employee of Legacy Health Strategies, LLC. All other authors declare that they have no conflicts of interest. The views and opinions by the authors here do not reflect the opinions of their respective organizations. They reflect personal accounts from the varied expertise and perspectives. KD (UEA), is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE) at Cambridge and Peterborough NHS Foundation Trust. The views expressed are those of the author[s] and not necessarily those of the NIHR or the Department of Health and Social Care. Funding Information: We thank all workstream members for their insights and contribution to the development of this paper including: Sandra Lamy (Gilead, UK), Precious McCowan, MS (End-Stage Renal Disease Network of Texas), Alexandra Moutet (UCB), and Erica Spies (EMD Serono Research & Development Institute, Inc.). Publisher Copyright: © 2022, The Author(s).
Uncontrolled Keywords: patient experience data,patient-focused healthcare,collective value patient experience,public health, environmental and occupational health,pharmacology, toxicology and pharmaceutics (miscellaneous),pharmacology (medical) ,/dk/atira/pure/subjectarea/asjc/2700/2739
Faculty \ School:
Faculty of Medicine and Health Sciences > School of Health Sciences
UEA Research Groups: Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life
Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health
Related URLs:
Depositing User: LivePure Connector
Date Deposited: 02 Aug 2022 12:30
Last Modified: 19 Oct 2023 03:24
DOI: 10.1007/s43441-022-00432-x


Downloads per month over past year

Actions (login required)

View Item View Item