PPIE Publications

Kaisler, R.E., Missbach, B. (2020). Co-creating a patient and public involvement and engagement ‘how to’ guide for researchers. Res Involv Engagem 6(32): online

Access: https://doi.org/10.1186/s40900-020-00208-3

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.

databases and other Sources

Literature Databases
Public Involvement Case Studies

Literature

Arnstein, S. R. (1969). A ladder of citizen participation. Journal of the American Institute of Planners, 35(4), 216-224.

Access: http://tiny.cc/Arnstein1969 

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. 

Deane, K., Delbecque, L., Gorbenko, O., Hamoir, A. M., Hoos, A., Nafria, B., ... & Brooke, N. (2019). Co-creation of patient engagement quality guidance for medicines development: an international multistakeholder initiative. Bmj Innovations, bmjinnov-2018. 
Greenhalgh, T., Hinton, L., Finlay, T., Macfarlane, A., Fahy, N., Clyde, B., & Chant, A. (2019). Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot. Health Expectations. 
Slattery, P., Saeri, A. K., & Bragge, P. (2019). Research co-design in health:  a rapid review. Open Science Framework.
Staley, K. (2015). ‘Is it worth doing?’ Measuring the impact of patient and public involvement in research. Research involvement and engagement, 1(1), 6.
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