@article{nokey,

title = {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},

url = {https://link.springer.com/article/10.1186/s40900-024-00631-w},

doi = {10.1186/s40900-024-00631-w},

issn = {2056-7529},

year  = {2024},

date = {2024-11-06},

urldate = {2024-11-06},

journal = {Research Involvement and Engagement},

volume = {10},

number = {116},

pages = {17},

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.},

note = {Source: Springer Nature },

keywords = {Patient Engagement Case Studies},

pubstate = {published},

tppubtype = {article}

}

@article{nokey,

title = {Expertise, experience, and excellence. Twenty years of patient involvement in health technology assessment at NICE: an evolving story},

url = {https://www.cambridge.org/core/journals/international-journal-of-technology-assessment-in-health-care/article/expertise-experience-and-excellence-twenty-years-of-patient-involvement-in-health-technology-assessment-at-nice-an-evolving-story/AB4A1F27188A4175379417CF943AD55D},

doi = {10.1017/S0266462320000860},

year  = {2020},

date = {2020-11-10},

journal = {International Journal of Technology Assessment in Health Care},

volume = {37},

number = {e15},

issue = {1},

pages = {1-7},

abstract = {From its inception in 1999, the National Institute for Health and Care Excellence (NICE) committed to including the expertise, experiences, and perspectives of lay people, patients and carers, and patient organizations in its health technology assessments (HTAs). This is our story of patient involvement in HTA: from early methods designed for use when assessing medicines, widening to address the different requirements of HTAs for interventional procedures, medical technologies, and diagnostic technologies. We also chart the evolution and development of all our patient involvement methods over the past 20 years through regular evaluation and by responding to external challenge. However, we know that processes and methods alone are not enough. Through case studies we demonstrate the value of patient involvement in HTA and highlight the unique perspectives and experiences that patients bring to HTA committees. Finally, we discuss the underpinning principles and commitments that have made NICE a world leader in delivering meaningful and legitimate patient involvement.},

note = {Source: Cambridge University Press},

keywords = {Patient Engagement Case Studies, Patient Involvement},

pubstate = {published},

tppubtype = {article}

}

@article{nokey,

title = {Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review},

author = {Vat LE, Finlay T, Schuitmaker‐Warnaar TJ, Fahy N, Robinson P, Boudes M, Diaz A, Ferrer E, Hivert V, Purman G, Kürzinger ML, Kroes R, Hey C and E.W. Broerse J.},

url = {https://onlinelibrary.wiley.com/doi/10.1111/hex.12951},

year  = {2019},

date = {2019-09-06},

abstract = {Background: Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision-making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies.



Objective: Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods.



Search strategy and inclusion criteria: We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut-off of publications after July 2018.



Data extraction and synthesis: Data were extracted from 91 publications, coded and thematically analysed.



Main results: A total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement.



Discussion and conclusions: Currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures.},

note = {Source: Published in Health Expectations},

keywords = {Patient Engagement Case Studies},

pubstate = {published},

tppubtype = {article}

}