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Health services research
Communication
Introducing patient and public involvement practices to healthcare research in Austria: strategies to promote change at multiple levels
  1. Raphaela E Kaisler1,
  2. Stefan Tino Kulnik2,3,
  3. Elisabeth Klager4,
  4. Maria Kletecka-Pulker4,5,
  5. Eva Schaden4,6,
  6. Andreas Stainer-Hochgatterer2
  1. 1 Open Innovation in Science Center, Ludwig Boltzmann Gesellschaft, Wien, Austria
  2. 2 Ludwig Boltzmann Institute for Digital Health and Prevention, Salzburg, Austria
  3. 3 Faculty of Health, Social Care and Education, Kingston University and St George's, University of London, London, UK
  4. 4 Ludwig Boltzmann Institute Digital Health and Patient Safety, Wien, Austria
  5. 5 Institute for Ethics and Law in Medicine, University of Vienna, Wien, Austria
  6. 6 Department of Anaesthesia, Intensive Care Medicine and Pain Medicine, Medical University of Vienna, Wien, Austria
  1. Correspondence to Dr Stefan Tino Kulnik; tino.kulnik{at}dhp.lbg.ac.at

Abstract

Background Patient and public involvement (PPI) in research is well-established in the UK. However, it can be challenging to introduce PPI to research communities where there is limited prior knowledge, experience or appreciation of PPI. We aimed to explore 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.

Methods We surveyed scientists at 21 research institutes of the Ludwig Boltzmann Gesellschaft (LBG) and representatives of 32 medical and university research ethics committees in Austria using online questionnaires. We analysed quantitative data using descriptive statistics, and we collated textual responses to open questions. We combined survey data with anecdotal evidence from our personal experience to summarise current challenges around implementing PPI in Austria.

Results Nineteen scientists from nine research institutes indicated generally positive attitudes towards PPI. However, the majority reported they rarely or never involved patients and members of the public in roles of consultation, collaboration or control in research. Six of eight ethics committees were unfamiliar with PPI. We discern five current challenges to implementing PPI in Austria: lack of knowledge and skills for PPI among scientists, scepticism about the usefulness of PPI, conflation of PPI with qualitative research, uncertainty about ethical requirements for PPI and uncertainty about publishing PPI activities.

Discussion We suggest that the provision of guidance about ethical requirements of PPI is a strategic priority. To address this, and following on from a recently introduced PPI training and grant scheme by the LBG, our surveys have initiated a dialogue with ethics committees and have informed the development of a checklist for ethical aspects of PPI.

Conclusion Our experiences may provide useful examples to others who seek to introduce or strengthen PPI practices within their own research communities.

  • citizen science
  • community participation
  • open innovation in science
  • patient and public involvement
  • service user involvement
  • surveys and questionnaires
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2020-045618

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    Footnotes

    • Twitter @RaphaelaKaisler

    • Contributors In May 2020, the authors formed a working group to exchange experiences of introducing patient and public involvement at their respective organisations. REK, STK, EK, MK-P, ES and AS-H conceived and planned the formative surveys of Ludwig Boltzmann Institutes and research ethics committees in Austria. REK, STK, EK, MK-P, ES and AS-H contributed to drafting the online questionnaires. The surveys were administered by REK and analysed by REK and STK. REK, STK, EK, MK-P, ES and AS-H contributed to the interpretation of survey findings. REK, STK, EK, MK-P, ES and AS-H contributed to the conceptualisation of this article. REK, STK, MK-P and ES wrote the first manuscript draft. All authors critically reviewed the manuscript for intellectual content, approved the final version and agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.