By BG Main, NS Blencowe, and JM Blazeby.
Hardly a day goes by without a prominent health story appearing in the press or other media. Headline-grabbing statements about “miracle” breakthroughs or “scare” stories are beloved of journalists, readers, and politicians alike. But hidden behind the headline is often a fundamental misunderstanding or misinterpretation of the results of research whereby trivial increases in risk or benefit are exaggerated and presented out of context. Reporting of relative rather than absolute risks further confuse the picture. This can result in confusion, anxiety, and on some occasions, an incorrect “take home” message.
Meanwhile, thousands of private encounters between patients and healthcare professionals take place each day during which treatment decisions are made. These conversations may require an understanding or interpretation of data from primary research, meta-analyses, or guideline documents. However, many healthcare professionals struggle to understand and interpret such data, never mind communicate them so as to be meaningful to patients. If patients and doctors are to make decisions together, surely they must be given access to data they can understand and which can be incorporated into methods for optimal communication? There is, we think, a clear case for a concerted effort from funding bodies, researchers, and journals to summarise the findings of research in ways that are understandable to those who the work is intended to benefit most: patients and healthcare providers. A secondary benefit might be a more accurate representation of the findings of research in the wider media.
Initiatives like CONSORT (Consolidated Standards of Reporting Trials) have been instrumental in driving improvements in the overall standards of reporting of studies. PubMed Commons has created a space for the post-publication review of papers and is in the spirit of open interaction between authors, journals, and readers that is being driven by prominent journals. The Cochrane collaboration already mandates plain language summaries of their reviews. In addition, campaigns like AllTrials are highlighting the need to make trial data available and transparent so as to make those who conduct research more accountable for what they publish. One missing link appears to be the co-production of lay language abstracts or summaries for every paper published, to put the research study and main findings into understandable, clear words. We propose an initiative which sets-out minimum standards for lay abstracts. These might include, but not be limited to, clear and plain explanations of what is already known, why the research was carried out, how and where the work was done, what the findings were, what the findings mean (as well as what they don’t mean), who paid for the research, and any conflicts of interest.
Tentatively named CRYSTAL (Consensus on Required items for mandatorY reporting of the results of STudies in lAy Language), we aim to develop this idea with the help and input of all stakeholders: patients, healthcare professionals, journal editors, researchers, funding bodies, journalists, politicians, and policy makers. We envisage that if research findings are made CRYSTAL clear for patients, doctors and others, high-quality communication and decision-making will be facilitated.
Your comments and ideas are welcome. Follow us on Twitter @CRYSTAL_collab.
Competing interests: We have read and understood the BMJ Policy on declaration of interests and confirm that we have no conflicts of interest to declare.
Jane Blazeby is professor of surgery and honorary consultant surgeon in Bristol, UK. She directs the Bristol Surgical Trials Centre and is a National Institute for Health Research Senior Investigator.