Consumers can be involved in some aspects of communication clinical trial results. Consumers bring the valuable perspective of patients to the process, to ensure that the findings are clear and accessible to a range of interested audiences.
Researchers will want to publish trial results in a peer-reviewed journal. This type of publication is critical for the credibility of the research and is necessary to disseminate the findings of investigations and trials. Peer-reviewed results will be accepted by the medical community and by regulators and committees who can approve using the drug in everyday clinical practice (see the Drug development pathway).
Journal publications can include reports of original research (including clinical trials), opinion pieces and systematic reviews, which are called ‘black literature’. Reports and personal opinion essays can also be published, and this is called ‘grey literature’. Grey literature is valuable for communicating results, but it is not peer-reviewed.
Results of cancer clinical trials can also be communicated:
- as conference presentations and posters
- through the media
- directly to trial participants via phone, email or letter
- directly to clinicians
- on websites.
Case study: consumer input into research results
In 2007, consumers started working on a manuscript that detailed consumer involvement in the design and development of a clinical trials website. Published in 2011, the article described the main features of the website, as well as user feedback after the website was launched.
The consumers all played different authorship roles. Some had to provide an accurate description of consumer involvement in the development of the website. Others had to help with data analysis and interpretation. The lead author collated all the information, wrote the draft manuscript, prepared the tables, got approval from the other authors and prepared the manuscript for submission.
The paper was submitted to 3 journals before being accepted. Two journals rejected it because it described a website, rather than the results of a study. However, the authors felt it was worthy of being published because descriptions of such websites in the literature are uncommon, and this paper could help other people develop similar websites. At the time, cancer clinical trial information on the internet was starting to become more common.
The consumers found it challenging convincing a journal that this research was worth publishing. But they were determined and persisted, and were finally successful after 9 months of trying to publish the research.
