New Initiative Seeks to Advance Patient and Public Involvement and Engagement in Clinical Studies

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Patient and public involvement and engagement has been used for applied research projects, including clinical trials, but has been lacking in statistical methodology research.

New research seeks to highlight the increasing importance of Patient and Public Involvement and Engagement (PPIE) in research studies. In an analysis published by Research Involvement and Engagement, the authors note that there are limited examples of the successful implementation of PPIE in statistical methodology research, which is primarily attributed to difficulties in identifying those who are interested in these types of projects.

Image credit: photon_photo | stock.adobe.com

Image credit: photon_photo | stock.adobe.com

The researchers note that typically, PPIE has been used for applied research projects, including clinical trials, but has been lacking in statistical methodology research. To address this challenge, the researchers created a short animation to help explain the importance of PPIE in statistical methodology research projects.

“Researchers sometimes incorrectly assume that PPIE is less important in these projects as this type of research has a less obvious benefit to patients,” the study authors wrote. “The animation helps to further explain these concepts. It describes what statistical methodology research is and why involving members of the public is still important.”

PPIE plays an important role in healthcare research by improving the quality, relevance, and appropriateness while focusing on a collaboration with patients and away from research that is about or for these populations, according to the study.

“PPIE covers a diverse range of approaches, from one-off information gathering such as a single project proposal meeting, to sustained partnerships such as regular meetings throughout the duration of a project,” the study authors wrote. “Patients and members of the public can shape research studies through various stages of a project, from initial planning through to dissemination of results.”

They noted that PPIE has become a critical aspect of funding applications, research proposals, and ethics applications, with institutions such as the National Institute for Health and Care Research promoting PPIE across all study designs. This collaborative approach allows patients to share their insights to contribute value to studies and to enhance their relevance to individuals who are most greatly affected by the research.

“Through engaging with patients and the public, researchers can ensure that they are answering relevant questions in the areas of greatest importance to those it impacts the most. This could be those with a specific health condition, or those in underserved groups who experience health inequalities due to a lack of representation in research,” the study authors wrote. “Similarly, in scenarios where the study population is not adequately represented by members of the research team, it is important to obtain relevant perspectives from members of those communities. Patients and the public can also benefit substantially from being involved in studies, leading to empowerment and a better understanding and management of their own conditions.”

However, there do exist barriers to overcome in PPIE because of issues the authors identified as researcher unpreparedness, communication gaps, and tokenistic inclusion to meet funding requirements.

For the study, the authors sought to develop an animation geared toward the public that improves their knowledge of statistical methodology research and emphasizes how important insights from patients are in the process.

The project was conducted from July 2022 to August 2023 by the Biostatistics Research Group at the Department of Population Health Sciences, University of Leicester, UK. Members of the research team worked to develop an accessible animation that describes statistical methodology and its role in PPIE for research projects by using storyboarding and scriptwriting combined with feedback from PPIE stakeholders.

Using that feedback, the team produced a short final animation about PPIE in statistical methodology using minimal text, simple animation techniques, and optimized to relay the message clearly and effectively.

They noted that the project sets a starting point for the public to learn more about PPIE and how they can become more meaningfully involved in methodology research.

“With the growing importance of PPIE in all research studies, not just applied research, our animation provides an ideal starting point for methodologists who wish to conduct PPIE but do not know where to start” the researchers wrote. “It also benefits members of the public as they can learn about statistical methodology and understand its role in shaping applied health research.”

The animation project can be viewed by clicking here.

Reference

Worboys, H.M., Broomfield, J., Smith, A. et al. Incorporation of patient and public involvement in statistical methodology research: development of an animation. Res Involv Engagem 9, 102 (2023). https://doi.org/10.1186/s40900-023-00513-7

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