Involving patients and the public in mesothelioma research can help scientists to make meaningful breakthroughs.
A group of researchers from the United Kingdom spoke with twenty-three mesothelioma researchers. They wanted to get their opinions on how helpful it would be to involve patients and the public in their mesothelioma research.
The researchers also ran online workshops and interviews to get the thoughts of patients and members of the public.
Doing Meaningful Mesothelioma Research
Mesothelioma is a rare form of cancer caused by asbestos exposure. It develops on the lining of internal organs like the lungs or abdominal cavity. There are about 2,000 cases of mesothelioma diagnosed in the United States each year.
Doing research on mesothelioma and effective treatments can be hard for a few reasons. It is hard to study because mesothelioma symptoms usually appear late in the disease. Patients typically survive between only 8 and 14 months after diagnosis.
The experience of living with a mesothelioma diagnosis is mentally and emotionally challenging for patients and their families. These factors can make researchers unwilling to approach people affected by mesothelioma to participate in research.
But there are studies that show that when patients get involved in research, they can feel more positive and hopeful about their condition.
Involving Patients and the Public in Research
The patients and members of the public said that participating in research would give them a sense of meaning and hope for the future. It would also help to create a community and reduce feelings of loneliness.
One participant said, “If you get to either talk to these people on different studies or see a paper, at least it gives you a bit of positivity.”
Many patients and members of the public were confused about how to get involved in research. They also did not understand what would happen if they did get involved in a study. Patients also said that the shock of their diagnosis made it hard to think about getting involved in research.
The authors of this study recommend that mesothelioma researchers offer different ways for patients and the public to get involved in research. One-time consultations could work well for people with difficult symptoms or a poor prognosis. Patients who are in better health might be interested in ongoing meetings or longer studies.
Marcu A, McGregor F, Egan B, Hill K, Cook T, Arber A. Developing sustainable patient and public involvement in mesothelioma research: multi-method exploration with researchers, patients, carers, and patient organisations. Res Involv Engagem. 2023;9(1):15. Published 2023 Mar 25. doi:10.1186/s40900-023-00426-5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10039679/