Does cancer research focus on areas of importance to patients?

Abstract

The majority of research ideas are proposed by clinicians or scientists and little is currently known about which areas of research patients feel are important. We performed a 4 week pilot patient survey at the Royal Marsden (a specialist cancer centre) to investigate patients’ views on priorities for cancer research. A total of 780 patients completed the survey and the top research priorities were identified as: detection and prevention of cancer, scientific understanding, curative treatment and personalised treatment. The top research priorities were remarkably consistent across age, gender and a variety of tumour types. We believe that patients’ views should be considered alongside those of clinicians and researchers when devising research proposals and strategies.

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 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 . Other studies (n = 8) also represented heterogeneous cancer types but had specific foci, for example, studies on young people (n = 3), palliation (n = 3) and a community with high cancer disparity (n = 1) …”

“…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).…”

“…Most studies reflect the democratizing value of PPI in research. This is especially clear in studies that aim to identify and/or prioritize research topics that describe patient perspectives as essential to defining the future research agenda …”

Priorities for Cancer Research From the Viewpoints of Cancer Nurses and Cancer Patients

“…Of these, 48 were excluded (Figure 1), whereas 15 studies that met our eligibility criteria were included. [1][2][3][4]8,[28][29][30][31][32][33][34][35][36][37] Interrater agreement to include the studies was 0.70 (SE = 0.87, P < .001), indicating strong agreement between the reviewers.…”