Research should benefit society at large. Involving citizens those who are affected by research may not only increase the quality, but can also push research towards generating greater societal benefits and relevant outcomes for citizens. Including citizens in research also has ethical implications, which necessitate structured guidance on ‘how to’ meaningfully involve them. In our project, we invited a multi-stakeholder group consisting of researchers from multiple disciplines, citizen scientists, youth and patient advocates to co-create a guide on ‘how to’ meaningfully involve citizens in research. In five consecutive workshops, we discussed how the characteristics of interactions between researchers and citizens (e.g., building trustful relationships and communication) and what a possible project steering structure enabling meaningful public involvement in research could look like. As a result of these workshops, the PPIE ‘How to’ Guide for Researchers was developed to support the implementation of ‘Patient and Public Involvement and Engagement’ (PPIE) activities and informed a PPIE Implementation Programme funding public involvement activities in Austria.
In this classic paper, Arnstein describes the different levels of participation in science and society. In this work, Arnstein makes an attempt to discuss the typology of citizen’s participation from her experiences with federal social programs, including urban renewal, anti-poverty, and Model Cities. Based on this, Arnstein developed levels of citizen participation arranged as rungs on a ladder, with each rung corresponding to the amount of “citizen control” within the process of determining a program or policy.
Meaningful patient engagement (PE) can enhance the development of medicines. However, the current PE landscape is fragmented and lacks comprehensive guidance. The authors systematically searched for PE initiatives. Multistakeholder groups integrated these with their own PE expertise to co-create a draft of PE Quality Guidance which was evaluated by public consultation. Projects exemplifying good PE practice were identified and assessed against the PE Quality Criteria to create a Book of Good Practices. Seventy-six participants from 51 organizations participated in nine multistakeholder meetings (2016–2018). The cocreated INVOLVE guidelines provided the main framework for PE Quality Guidance and were enriched with the analysis of the PE initiatives and the PE expertise of stakeholders. Seven key PE Quality Criteria were identified. The PE Quality Guidance was generally agreed to be useful for achieving quality PE in practice, understandable, easy to use, and comprehensive.
There are numerous frameworks for supporting, evaluating and reporting patient and public involvement in research. The literature is diverse and theoretically heterogeneous. This article aims to identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. The plethora of frameworks combined with evidence of limited transferability suggests that a single, offthe-shelf framework may be less useful than a menu of evidence-based resources which stakeholders can use to co-design their own frameworks.
In this rapid review, a systematic approach to research papers covering co-design processes along the research cycle is depicted. Results show that research co-design appears to be widely used but seldom described or evaluated in detail. Though it has rarely been tested empirically or experimentally, existing research suggests that it can benefit researchers, practitioners, research processes and research outcomes. Realizing the potential of research co-design may require the development of clearer and more consistent terminology, better reporting of the activities involved, and better evaluation.
In recent years, there has been considerable interest in finding out what difference patient and public involvement makes in research projects. Researchers gain an understanding of involvement through their direct experience of working with patients and the public. This is ‘knowledge in context’ or ‘insight’ gained in the same way that patients gain expertise through their direct experience of a health condition. This means that detailed accounts of involvement from researchers already provide valuable learning to others, in the same way that patients’ insights help shape research. However, the impact of involvement will always be somewhat unpredictable, because at the start of any project, researchers ‘don’t know what they don’t know’—they do not know precisely what problems they might anticipate until the patients/members of the public tell them.