It’s plain and simple: transparency is good for science and in the public interest

Trials

Helene Faure¹  Simon Denegri² 

[1] Database Manager Current Controlled Trials, BioMed Central, 236 Gray's Inn Road, London WC1X 8HB, United Kingdom;Chair INVOLVE, NIHR National Director for Public Participation and Engagement in Research, Involve, 33 Corsham Street, London N1 6DR, United Kingdom

关键词: Guidance;    Lay summary;    Plain english;    Transparency;    Trial;   

Others  :  1093426
DOI  :  10.1186/1745-6215-14-215

 received in 2013-07-02, accepted in 2013-07-02,  发布年份 2013

【 摘 要 】

In the past couple of years, there has been a growing focus on the need to make scientific output accessible to a greater number of people, especially in the field of clinical research. The public are being urged to become more well-informed and to ask their doctors about taking part in clinical trials.

A key finding of a report from the Association of Medical Research Charities was that all published scientific papers would benefit from having a section in plain English. Researchers running a clinical trial are expected to provide a summary of their intended research at various stages of the research process. However, there is evidence that existing summaries are of variable length and quality and not always in plain English.

As a result, the National Institute for Health Research (NIHR) commissioned a review of the guidance that is available to researchers. However, recent initiatives demonstrate that there are still a number of challenges in making current research both accessible and understandable by prospective participants.

BioMed Central also has a number of ongoing initiatives involving trial registration services and journals.

【 授权许可】

   
2013 Denegri and Faure; licensee BioMed Central Ltd.

【 参考文献 】

• [1]NHS Constitution [http://www.nihr.ac.uk/awareness/Pages/awareness_constitution.aspx webcite]
• [2]Commons Select Committee Enquiry On Clinical Trials [http://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/inquiries/parliament-2010/clinical-trials/ webcite]
• [3]UK Clinical Trials Gateway [http://www.ukctg.nihr.ac.uk/default.aspx webcite]
• [4]ClinicalTrials.gov [http://www.clinicaltrials.gov/ webcite]
• [5]International Standard Randomised Controlled Trial Number Register [http://www.controlled-trials.com/isrctn/ webcite]
• [6]Association of Medical Research Charities [http://www.amrc.org.uk/our-members_patients-participate webcite]
• [7]INVOLVE: Improving the Quality of Plain English Summaries for National Institute for Health Research (NIHR) Funded Research Eastleigh 2013. [http://www.invo.org.uk/wp-content/uploads/2013/03/Improving-quality-of-plain-English-summaries-report-final.pdf webcite]
• [8]Plain English summaries [http://www.invo.org.uk/resource-centre/plain-english-summaries/ webcite]
• [9]Health Technology Assessment [http://www.journalslibrary.nihr.ac.uk/hta webcite]
• [10]NIHR Journals Library [http://www.netscc.ac.uk/nihr_journals_library/ webcite]
• [11]Transparency and reporting of clinical trials in the UK [http://blogs.biomedcentral.com/bmcblog/2013/05/17/transparency-and-reporting-of-clinical-trials-in-the-uk/ webcite]
• [12]Guidance notes for writing lay summaries [http://www.controlled-trials.com/isrctn/lay_summary_guidance webcite]