Meet the researchers: an alternative method of engaging patients with research in mesothelioma

Our plain-English summary of Meet the researchers: an alternative method of engaging patients with research in mesothelioma, by K. Hill, M. Portman, Z. Tabi (Research Involvement and Engagement, 2018).

The study

• Authors: K. Hill, M. Portman, Z. Tabi
• Journal: Research Involvement and Engagement
• Published: 2018;4:33
• Cited by: 6 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Plain English Summary: There are new ways to engage people with science and research but many patient support groups and charitable organisations still hold traditional meetings to provide updates on their activities and to report new developments in their field of interest. These meetings often feature presentations given by medical doctors or, in the case of research-focussed organisations, by research scientists.Receiving feedback from people who are confused and sometimes upset by some types of information, and the way it is presented at meetings, made us think about better ways for researchers to discuss their ideas for new research, or share the findings from completed projects, with patients and members of the public.This article describes a method of public engagement called "Meet the Researchers" that enables people to hear about current trends in research face to face with the researchers planning or conducting it. "Meet the Researchers" is designed to promote discussion and allow questions to be asked in a relaxed and informal way, in small groups, which is less daunting than asking questions in front of a conference audience. The aim is to break down the barriers between researchers and patients, and enable conversations that will lead to meaningful engagement and a better understanding of research. Additionally we aim to improve understanding of how results are passed on to doctors and nurses and translated into improvements in patient care.The method was tested with patients and was rated very highly by them in the feedback they gave.

Abstract: Background Innovative approaches to engaging people with science exist but are often framed around interactive events or social media technologies. Notwithstanding the availability of novel approaches, many patient support groups and charitable organisations continue to hold traditional meetings and seminars to provide information and updates on their activities, and report on developments in their field of interest. In the case of research-focussed organisations, these meetings often take the form of presentations delivered by clinical experts or research scientists.Observation of mesothelioma patients, their relatives, friends and carers attending scientific or clinical-themed meetings has shown that they can be confused, and sometimes distressed, by presentations. This can be due to didactic presentations that are not properly targeted to this audience and a lack of a general overview or summary at the end of meetings that would provide some simple take home messages. This experience motivated the development of a less formal method of sharing complex information and ideas in a simplified manner. "Meet the Researchers" aims to make researchers accessible to patients in order to raise awareness and understanding of research and to explain how research translates into, and informs practice. This approach encourages the use of plain English, removes the tendency to rely on PowerPoint slides to convey the message and moreover, provides an opportunity for researchers to hear patients' views. Methods Small groups of participants met face to face with the researchers planning or conducting research into their condition, and discussed the topics in a relaxed and informal way. The researchers spent a minimum of 20-min with each group before moving on to the next. Info-graphics on a portable device or printed hand-outs in plain English were allowed but no formal presentations were made. Results Our method has been evaluated using feedback data from three annual events held from 2016 to 2018: 100% of participants indicated that they liked the format "very much"(76.0%) or "quite a lot"(24.0%); 80.4% found the topics "very interesting" and 75.9% found it "very easy" to ask questions. Free text comments revealed themes of 'hope' and 'altruism'. Researchers also reported benefits from participation such as learning about patient' priorities and networking. Conclusion "Meet the Researchers" provides a unique opportunity for mesothelioma researchers and patients, relatives and carers to interact on a more equal footing. It stimulates discussion, promotes understanding and provides a more informal setting for non-professional participants to ask questions. It is a format that could easily be adapted for use in other conditions.

In plain English

This was a methodology paper, not a study of asbestos exposure or disease. The authors described "Meet the Researchers," an event format used since 2011 at the June Hancock Mesothelioma Research Fund's annual Action Mesothelioma Day in Leeds. Patients, relatives, carers and others sat at tables while research groups rotated, spending at least 20 minutes per table without formal presentations. Feedback forms from 2016 to 2018 came from 102 people: 39 patients, 48 relatives, carers or bereaved relatives, and 15 professionals. The authors reported percentages from feedback they said was aggregated for 2016 and 2018 (the abstract says 2016 to 2018), without giving the number of responses behind each figure: 76.0% liked the format "very much" and 24.0% "quite a lot"; 80.4% rated the topics "very interesting"; 75.9% found it "very easy" to ask questions. In the same feedback, 8.4% found the information only "moderately easy to understand." Comments showed themes of hope and altruism, and researchers reported learning from the event. The authors noted three limits: feedback-form data constrained their evaluation, feedback tends to be positive, and no comparable data existed from earlier traditional meetings. They concluded the format could be adapted for other conditions.

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: Methodology paper describing a patient engagement event format, with a descriptive evaluation based on feedback questionnaires and free-text comments
• Who was studied: Attendees of the June Hancock Mesothelioma Research Fund's annual Action Mesothelioma Day events in Leeds, where the format has been used since 2011. Attendees included mesothelioma patients, friends and relatives, bereaved relatives, representatives of other cancer support groups, and healthcare and legal professionals. Table 1 shows that 102 attendees gave feedback from 2016 to 2018: 39 patients, 48 relatives/carers/bereaved relatives, and 15 healthcare and other professionals. This was 45.3% of total attendees. Researchers also gave feedback.
• Exposure: No asbestos exposure was studied. The subject was an event format: research groups rotated between tables of 8 to 10 participants, gave a short plain-English introduction, and then took questions. There were no formal presentations.
• Main results:
  • In feedback the authors say was aggregated for 2016 and 2018 (number of responses not stated), 76.0% of respondents liked the format "very much" and 24.0% liked it "quite a lot"
  • The authors state the questionnaire percentages come from aggregated feedback for the years 2016 and 2018
  • In the same aggregated feedback, 80.4% of respondents rated the topics covered as "very interesting"
  • In the same aggregated feedback, most respondents found the information "very clear and easy to understand" (65.3%) or "quite easy" (25.3%)
  • In the same aggregated feedback, 8.4% of respondents rated the information "moderately easy to understand" and one respondent found it "not at all easy to understand"
  • In the same aggregated feedback, 75.9% of respondents found it "very easy" to ask the questions they wanted to ask
  • Free-text comments under the category "The Future" showed themes of hope and altruism
  • In 2018, all respondents said they had found the meeting useful
  • Researchers reported learning from the event, which the authors called an unanticipated outcome
• The authors' conclusion: The authors concluded that the informal format breaks down barriers between researchers and patients and allows interaction on a more equal footing. They also concluded that it could be replicated or adapted for other conditions and settings.
• Limitations the authors state:
  • The evaluation was constrained by the nature of the data collected from feedback forms
  • Feedback data is generally skewed to the positive
  • No suitable feedback data from earlier traditional-format events was available for comparison
  • Practical problems at the events included noise from adjacent tables, difficulty hearing and fatigue

Topics

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

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