Research priorities in mesothelioma: A James Lind Alliance Priority Setting Partnership

Abstract

The top 10 questions cover a wide portfolio of research (including assessing the value of immunotherapy, individualised chemotherapy, second-line treatment and immediate chemotherapy, monitoring patients with pleural thickening, defining the management of ascites in peritoneal mesothelioma, and optimising follow-up strategy). This list is an invaluable resource, which should be used to inform the prioritisation and funding of future mesothelioma research.

Current trends in patient and public involvement in cancer research: A systematic review

“…The UK represents the majority of the publications (n = 12), followed by the United States (n = 7) and Australia (n = 3) . A single study represents several countries (Germany, Iceland, Italy, Japan, Spain, the UK), and the remaining studies report findings from other countries: Sweden, Denmark, the Netherlands and Canada …”

“…The populations in the studies were defined in various ways, though most were disease‐specific, while other populations were defined according to age or ethnicity. The majority of the studies (n = 13) focused on specific cancer diseases: breast cancer (n = 4), including a study specifically focusing on breast cancer in a Latino population, followed by lung cancer (n = 4), blood cancer (n = 2), colorectal cancer (n = 1), gynaecological cancer (n = 1) and bowel cancer (and other bowel diseases) (n = 1) . Some studies (n = 8) represented heterogeneous cancer types with no specific population/disease focus .…”

“…The majority of the studies (n = 20) reported PPI at a single stage in the research process. Some studies (n = 5) involved patients at two stages (both the definition and prioritization of research questions/themes) . A few studies (n = 3) involved patients/the public at various research stages .…”

“…Because these studies reported PPI at several stages, the number of research stages (n = 41) in the figure exceeds the number of studies included (n = 27). Most studies reported PPI for prioritization of research themes/questions (n = 10), followed by development of recruitment strategies for research (n = 9), definition of research themes/questions (n = 7), method development (n = 6), study design development (n = 3), dissemination strategy (n = 2), dissemination (n = 2), analysis (n = 1) and recruitment (n = 1) . None of the studies involved patients in data generation (eg, as interviewers/facilitators).…”

Understanding the priorities for women diagnosed with lymphangioleiomyomatosis: a patient perspective

“…In addition, computer literacy and internet access also limit those who are able to participate. However, involving patient organisations in consensus statements or task forces has become indispensable, especially for rare and orphan diseases [12], and patients' initiatives are essential to inform future clinical research, reveal structural problems in standards of care, gain political attention and ensure that goals are reflective of patients' needs, leading to improved outcomes; this has been headed up by activities in the mild to moderate hearing loss and mesothelioma research fields with organisations such as the James Lind Alliance [28, 29]. …”