A Less Formal Approach to Connecting Mesothelioma Patients and Researchers

Mesothelioma researchers in England are experimenting with an innovative way to connect patients and scientists in the quest for a cure.

Malignant mesothelioma, the cancer most closely associated with asbestos exposure, is one of the world’s most deadly malignancies. Many patients diagnosed with mesothelioma are given only months to live.

Increasingly, clinical research holds great promise for new ways of approaching diseases like mesothelioma, but understanding that research and its implications can be difficult, even when listening to the researchers directly.

To bridge the gap, investigators with the June Hancock Mesothelioma Research Fund (JHMRF) in Sheffield, UK have introduced “Meet the Researchers” — a program designed to engage mesothelioma patients and researchers in a more informal way.

Mesothelioma Research Can Be Hard to Understand

Outside of doing online research through sites like Surviving Mesothelioma, one of the ways that mesothelioma patients and families can learn about new research is by attending conferences where scientists present their theories and research findings.

While these meetings can be highly informative, the JHMRF team says the process is a less-than-ideal way for researchers and patients to connect.

“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,” explains Kate Hill, a Senior Research Fellow in Applied Health at the University of Leeds and a JHMRF advisor. “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.”

Connecting Mesothelioma Patients with Relevant Research

The team developed an alternative way to make researchers accessible to patients so that they can understand new mesothelioma research and how it might apply to their clinical care.

They had small groups of participants meet face-to-face with researchers who were planning or conducting studies into their condition. Researchers spent at least 20 minutes with each group, explaining their studies and answering questions. Meeting-style “presentations” were not allowed.

“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,” writes Dr. Hill.

Informal Approach Makes for Better Understanding

The JHMRF has been holding annual “Meet the Researchers” events since 2016. They report that 100 percent of participants liked the format. More than 80 percent found the topics “very interesting” and 76 percent said it was “very easy” to ask questions.

The researchers benefitted from the connections, too. Feedback showed that they were able to learn more about patients’ priorities and do some networking.

In a published summary of their research, the team says the format offered a “unique opportunity for mesothelioma research and patients…to interact on a more equal footing” and may have implications for patients with diseases other than mesothelioma.

“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,” concludes Hill.

Source:

Hill, K, et al, “Meet the researchers: an alternative method of engaging patients with research in mesothelioma”, October 15, 2018, Research Involvement and Engagement, https://doi.org/10.1186/s40900-018-0119-x