Developing sustainable patient and public involvement in mesothelioma research: multi-method exploration with researchers, patients, carers, and patient organisations

Our plain-English summary of Developing sustainable patient and public involvement in mesothelioma research: multi-method exploration with researchers, patients, carers, and patient organisations, by A. Marcu, F. McGregor, B. Egan, et al (Research Involvement and Engagement, 2023).

The study

• Authors: A. Marcu, F. McGregor, B. Egan, K. Hill, T. Cook, A. Arber
• Journal: Research Involvement and Engagement
• Published: 2023;9(1):15
• Cited by: 6 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Background: Rare diseases where prognosis is poor provide limited scope for patient and public involvement (PPI). One such disease is mesothelioma, a cancer of the lung pleura or of the peritoneum caused by exposure to asbestos, where PPI is poorly documented. We undertook to explore how PPI could be facilitated in mesothelioma research.

Methods: An online survey with mesothelioma researchers (n = 23) assessed the perceived benefits and challenges of PPI in mesothelioma. Six online workshops and thirteen in-depth interviews with patients and the public explored their views on how PPI could be increased in mesothelioma and their motivations to become PPI representatives in the future. The survey data were analysed using descriptive statistics and the interviews, using Thematic Analysis.

Results: In the survey, 26% (n = 6) of the researchers did not include PPI in their research, while 74% (n = 17) did, finding it most beneficial at the stages of applying for funding and dissemination. The main perceived benefits of PPI were clarifying the research question and outcome measures, making research more credible and relevant to patients' needs, and increasing its impact. The main perceived challenges to PPI were the general poor prognosis in mesothelioma, and funding timescales which hindered timely recruitment of PPI representatives. The analysis of the interviews with the patients and public revealed three main themes: "Motivations to become a PPI representative in the future", "Understanding the nature of PPI during the project", and "Perceived challenges to PPI in mesothelioma". Altruism and the need for hope were the main reasons to wish to become involved in PPI in the future. For many participants, the project proved to be a journey of understanding the nature of PPI, a concept that was not easy to grasp from the start. The participants perceived certain barriers to PPI such as high symptom burden in mesothelioma, the abstract concept of PPI, and the use of scientific language.

Conclusions: The present research provides a detailed picture of the benefits and challenges of PPI in mesothelioma. We recommend long-term engagement with mesothelioma support groups so that researchers achieve meaningful and sustainable PPI in mesothelioma research.

© 2023. The Author(s).

In plain English

This study explored how patients and the public could be brought into planning and running mesothelioma research in the UK. This is called patient and public involvement, or PPI. The study had two parts, both run online during the COVID-19 pandemic. First, 23 members of the Mesothelioma Research Network answered an online survey. Of these, 6 (26%) did not include PPI in their research and 17 (74%) did. Of the 17, 14 (82%) usually included PPI when sharing findings. Challenges the researchers named included lack of funding, tight deadlines and patients' short prognosis. Second, people living with pleural or peritoneal mesothelioma, family members (most of them bereaved) and coordinators of patient organisations took part in six workshops, and 13 were interviewed. They were motivated by wanting to help other patients and by hope. Many found PPI hard to grasp at first, and scientific language was a barrier. The authors noted that the survey response rate was low and that most patient participants had responded well to treatment. The authors recommended long-term engagement with mesothelioma support groups.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Two-part study using more than one method: an online survey of mesothelioma researchers, plus six online workshops and 13 semi-structured interviews with patients, family members and patient organisation coordinators, analysed with Thematic Analysis
• Who was studied: 23 mesothelioma researchers from the Mesothelioma Research Network (survey, 2020). Workshop and interview participants were recruited through UK asbestos and mesothelioma support charities between October 2020 and January 2021. They included seven people living with mesothelioma aged 59 to 79 (five with pleural mesothelioma, one with peritoneal mesothelioma, and one with pleural mesothelioma who died during the project), five family members (four bereaved), and three workers at patient organisations. Thirteen were interviewed: six patients, five family members and two coordinators.
• Main results:
  • Of the 23 surveyed researchers, 26% (n = 6) did not currently include PPI in their research and 74% (n = 17) did
  • Among the 17 researchers who included PPI, 82% (n = 14) usually did so at the stage of disseminating findings
  • The 17 researchers who included PPI agreed it was most beneficial at the stages of applying for funding, dissemination, and facilitating uptake of findings
  • Asked whether their research would benefit from more PPI, the 17 researchers who included PPI answered yes 82% (14), no 6% (n = 1), not sure 11.7% (n = 2)
  • Among the 6 researchers who did not include PPI, 66.6% (n = 4) agreed PPI would increase costs and 66.6% (n = 4) agreed it would increase time
  • Researchers who included PPI named practical challenges such as lack of funding and tight proposal deadlines
  • In the interviews, wanting to help other mesothelioma patients was a main motivation to take part
  • For many patient and public participants, the purpose of PPI became clear only over time
  • Scientific language was an additional barrier to involvement for patient and public participants
• The authors' conclusion: The authors recommended long-term engagement with mesothelioma support groups so that researchers achieve meaningful and sustainable PPI in mesothelioma research
• Limitations the authors state:
  • Most patient participants recruited and retained had responded well to treatment and may not be representative of mesothelioma patients in general
  • Requiring online participation may have reduced recruitment of patients less familiar with online technology
  • The sample was not culturally diverse; all participants were of White British ethnicity
  • The researcher survey had a relatively low response rate, which precluded in-depth analysis

Topics

Medical terms in this study, explained in our Lexicon: Mesothelioma, Prognosis, Pleura, Peritoneum.

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