Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Nov 6;10(1):116.
doi: 10.1186/s40900-024-00631-w.

Embedding patient engagement in the R&D process of a life sciences company through co-creation with a patient expert R&D board: a case study

Affiliations

Embedding patient engagement in the R&D process of a life sciences company through co-creation with a patient expert R&D board: a case study

Estelle Jobson et al. Res Involv Engagem. .

Abstract

Patient involvement is crucial in healthcare, a factor increasingly recognised by life sciences companies and research institutes. This article presents a case study on Servier, a life sciences company that founded a patient expert board, ahead of launching a new research and development (R&D) institute. The aim was to foster a patient-centric culture within the company. The case study explores key developments in patient and public involvement, emphasising a shift from paternalistic to patient-centred approaches, noting few available case studies on patient board collaborations in life sciences. It outlines the evolution of the board, its impact, and practical lessons learned, with related recommendations. The patient board resulted from a three-way collaboration between the company, Patvocates (a patient consultancy), and patient experts recruited. The patient consultancy played a crucial role in project management, governance, and facilitating relationships. The case study provides the context, timeframe, foundations laid, engagement of patient experts, and foundational values, including: co-creation, fair market value remuneration, voluntary participation, and patient-centric meeting protocol. Eighteen patient experts, representing ten disease areas and ten European countries, joined the board and helped prioritise and co-create projects. Ideas for activities were sourced from brainstorming sessions and an in-company challenge. The collaboration yielded five core ideas, each forming a working group. The study describes the groups and their outputs: a patient advisory council, an interactive gallery of patient experience in R&D, patient engagement and entrepreneurship in life sciences, creating patient-focused decentralised trials (DCTs), and staff training on patient engagement. The article emphasises how the organic evolution of the collaboration led to significant insights. Hurdles faced by the company included: upstream planning, cross-company buy-in, compliance, and internal resource allocation. Recommendations for the wider community included: identifying and contracting patient partners; clarifying roles; managing expectations; building trust; logistics; and sustainability. This case study presents a practical, positive example of patient engagement within a life sciences company, offering insights into the establishing, running, and the impact of collaborating with a patient expert board. Lessons learned and recommendations may serve as a model for other companies seeking to engage with patients and evolve towards a more patient-centric approach in their strategies.

PubMed Disclaimer

Conflict of interest statement

Some authors (SA, AL, LR, and GM) are full-time employees of Servier. No authors own Servier stocks. One author (JG) is CEO of the patient consultancy, Patvocates. One author (DS) is a part-time employee of Patvocates. One author (AA) is both a full-time employee of Patvocates and a member of the patient board. The co-corresponding author (EJ), and patient contributors (AA, SG, BN, TS, OS, LS, JW) are members of the Servier Saclay R&D Patient Expert Board, as described in the article, and their affiliation appears accordingly.

Figures

Fig. 1
Fig. 1
The evolution of patient care, from a paternalistic to patient-centric and partnership models Source Pomey and Lebel, 2016 [15]
Fig. 2
Fig. 2
Types of partners and expertise: patients, patient experts, patient advocates, and patient advocate experts. Source Bettina Ryll, Melanoma Patient Network Europe, 2022 [26]. (Reproduced with permission under Creative Commons License CC BY-NC-SA 4.0)
Fig. 3
Fig. 3
Seven patient engagement quality criteria. Source PFMD, 2018 [43]. (Reproduced with permission under Creative Commons License CC BY-NC-SA 4.0)
Fig. 4
Fig. 4
Key focus areas and actions for creating a patient board. Note Available for reproduction under a Creative Commons License CC BY-NC-SA 4.0

Similar articles

Cited by

References

    1. Taylor K. Paternalism, participation and partnership—the evolution of patient centeredness in the consultation. Patient Educ Couns. 2009;74:150–5. - PubMed
    1. World Health Organization. Constitution of the World Health Organization [Internet]. WHO; 1948 [cited 2024 Feb 1]. Available from: https://www.who.int/about/accountability/governance/constitution
    1. Stergiopoulos S, Michaels DL, Kunz BL, Getz KA. Measuring the impact of patient engagement and patient centricity in clinical research and development. Ther Innov Regul Sci. 2020;54:103–16. 10.1007/s43441-019-00034-0. - PubMed
    1. U.S. FDA PEAC. Patient Engagement in Medical Device Clinical Trials: Discussion Document [Internet]. U.S. FDA; 2018 [cited 2024 Feb 15]. Available from: https://www.fda.gov/media/117890/download
    1. U.S. FDA. Patient Engagement in the Design and Conduct of Medical Device Clinical Studies: Guidance for Industry, Food and Drug Administration Staff, and Other Stakeholders [Internet]. Patient Engagem. Des. Conduct Med. Device Clin. Stud. FDA; 2022 [cited 2024 Feb 15]. Available from: https://www.fda.gov/regulatory-information/search-fda-guidance-documents...

LinkOut - more resources