@article{nokey,

title = {Characterising meaningful patient and public involvement in the pharmaceutical industry research setting: a retrospective quality assessment},

url = {https://bmjopen.bmj.com/content/13/8/e071339},

year  = {2023},

date = {2023-07-14},

urldate = {2023-07-14},

abstract = {Objectives: Patient and public involvement (PPI) in clinical research has a well-established infrastructure in the UK, and while there has been good progress within pharmaceutical-industry-sponsored research, further improvements are still needed. This review aims to share learnings from quality assessments of historical PPI projects within Pfizer UK to inform future projects and drive PPI progress in the pharmaceutical industry.



Design and setting: Internal assessments of Pfizer UK PPI projects were conducted to identify all relevant projects across the medicines development continuum between 2017 and 2021. Five sample projects were developed into case studies.



Outcome measure: Retrospective quality assessments were performed using the Patient Focused Medicines Development (PFMD) Patient Engagement Quality Guidance (PEQG) tool. Recommendations for improvement were developed.



Results: Retrospective case study analysis and quality framework assessment revealed benefits of PPI to both Pfizer UK and to external partners, as well as challenges and learnings to improve future practice. Recommendations for improvement based on these findings focused on processes and procedures for PPI, group dynamics and diversity for PPI activities, sharing of expertise, the importance of bidirectional and timely feedback, and the use of understandable language in materials.



Conclusions: PPI in medicines development is impactful and beneficial but is still being optimised in the pharmaceutical industry. Using the PFMD PEQG tool to define gaps, share learnings and devise recommendations for improvement helps to ensure that PPI is genuine and empowering, rather than tokenistic. Ultimately, these recommendations should be acted on to further embed PPI as an integral part of medicines development and health research within the pharmaceutical industry. This article includes a plain language summary in the supplement.},

note = {Source: Published in BMJ Open},

keywords = {Guidelines},

pubstate = {published},

tppubtype = {article}

}

@article{nokey,

title = {Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities},

url = {https://onlinelibrary.wiley.com/doi/10.1111/hex.12873},

year  = {2019},

date = {2019-02-13},

urldate = {2019-02-13},

abstract = {Background: Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts.



Objective: The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts.



Search Strategy, Inclusion Criteria, Data Extraction and Synthesis: We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and abstracted data.



Main Results: We identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were “respect” (n = 25, 45%) and “equitable power between all team members” (n = 21, 38%). Creating “trust between patient stakeholders and researchers” was described in 17 (31%) articles. Twenty-seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders’ time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement.



Discussion and Conclusions: Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient-centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.},

note = {Source: Published in Health Expectations},

keywords = {Guidelines},

pubstate = {published},

tppubtype = {article}

}

@article{nokey,

title = {Editorial: The European Patients Academy on Therapeutic Innovation (EUPATI) Guidelines on Patient Involvement in Research and Development},

author = {Spindler, P., Lima, BS},

url = {https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2018.00310/full},

year  = {2018},

date = {2018-11-08},

note = {Source: Published in Frontiers},

keywords = {Guidelines},

pubstate = {published},

tppubtype = {article}

}