Clinical practice guidelines provide expert recommendations that drive patient treatment decisions. Armstrong and colleagues convened two groups to look at clinical guidelines in dementia – one with patient representation and one without. The group that included patients picked out specific patient-relevant topics that the group with no patient representation failed to identify. This report highlights the essential role patients have in developing clinical recommendations that are fit for purpose. It also questions the acceptability and value of guidelines that do not involve patients early in the development process.

Building the evidence base for the value of PE in medicines development also featured in the paper by Levitan and colleagues. They demonstrated that PE activities which may reduce protocol amendments, improve recruitment, adherence and retention can have considerable financial value – over 500-fold increase compared with investment in PE – and accelerate time to launch.

Mader and colleagues provided a tantalising view of what patient-led research could look like. They report on the feasibility of the Patient Led Research Hub – an initiative that allows patients and the public to propose research questions and to design and conduct their own research with support from research professionals.

Publications this year also showcased the increasing maturity of PE and a collaborative move from ‘talking’ to ‘doing’. Huang and colleagues presented a proposed multi-stakeholder framework for clinical trials recruitment planning (developed by the Clinical Trials Transformation Initiative; CTTI), with actionable recommendations and tools.

The Economist Intelligence Unit put patient-centricity at the heart of their in-depth report on the future of drug development. A chapter dedicate to patient-centric trials highlights the need to involve patients in trial design and in defining outcomes that are meaningful to patients. The report emphasises the potential of this approach to improve the quality and relevance of research to patients, as well as boosting participation in trials.



Armstrong MJ, et al. Impact of patient involvement on clinical practice guideline development: a parallel group study. Implement Sci. 2018;13(1):55.

Levitan B, et al. Assessing the Financial Value of Patient Engagement: A Quantitative Approach from CTTI’s Patient Groups and Clinical Trials Project. Ther Innov Regul Sci. 2018;52(2):220-229.

Mader LB, et al. Inverting the patient involvement paradigm: defining patient led research. Res Involv Engagem. 2018;4:21.

Huang GD, et al. Clinical trials recruitment planning: A proposed framework from the Clinical Trials Transformation Initiative. Contemp Clin Trials. 2018;66:74-79.

Economist Intelligence Unit: The Innovation Imperative – The Future of Drug Development (accessed online, 17 December 2018)