Papers

The paper investigates which factors influence whether scientific researchers actually make use of the unprecedented volume of data being shared these days.

LaFlamme, M., Poetz, M., & Spichtinger, D., 2022. Seeing oneself as a data reuser: How subjectification activates the drivers of data reuse in science. PloS one, 17(8), e0272153.

Here you find a short Literature Review on Societal Research Impact and how it is evaluated and developed in different countries.

Working collaboratively and openly together with stakeholders has become a common phenomenon in research, however the stakeholder perspective on this is yet unknown. This paper reveals the enablers and barriers for such collaborations from the viewpoint of stakeholders and how they perceive such collaboration.

Kaisler, R.E. and Grill, C., 2021. Enabling Transdisciplinary Collaboration: Stakeholder Views on Working With “Children With Mentally Ill Parents” Research Groups. Frontiers in psychiatry, 12.

Patient and public involvement (PPI) in research is well-established in the UK, but it can be challenging to introduce PPI to research communities where there is limited prior knowledge, experience or appreciation of PPI. This paper explores current PPI practices, experiences and ethical and operational challenges with PPI within our own research community in Austria, to inform strategies for supporting PPI in Austria going forward.

Kaisler, R. E., Kulnik, S. T., Klager, E., Kletecka-Pulker, M., Schaden, E., & Stainer-Hochgatterer, A., 2021. Introducing patient and public involvement practices to healthcare research in Austria: strategies to promote change at multiple levels. BMJ open , 11(8), e045618.

In this project, the authors 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.

Kaisler, R. E., & Missbach, B., 2020. Co-creating a patient and public involvement and engagement ‘how to’guide for researchers. Research involvement and engagement, 6(1), 1-10.

Novel forms of engagement increase the opportunity to generate innovative problem-solving approaches. In this case study, the “Village project”, the authors investigate different measures aiming to drive evidence-based change, towards making a sustainable impact for children that have a parent with a mental illness.

Kaisler, R. E., & Paul, J. L., 2019. Evidence-based practice and polices for impact on mental health of children and adolescents. fteval Journal for Research and Technology Policy Evaluation, (48), 114-119.

Patient-Centered Outcomes Research Institute (PCORI) Literature Database

NIHR INVOLVE evidence library

NIHR INVOLVE Case Studies

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 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.

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

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.

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.

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, off-the-shelf framework may be less useful than a menu of evidence-based resources which stakeholders can use to co-design their own frameworks.

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.

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.

Slattery, P., Saeri, A. K., & Bragge, P. 2019. Research co-design in health: a rapid review. Open Science Framework.

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.

Staley, K. 2015. ‘Is it worth doing?’ Measuring the impact of patient and public involvement in research. Research involvement and engagement, 1(1), 6.