Do Patient-Experience Publications Have Authors with Patient Experience?

Research presented at ISMPP Annual Meeting US 2023Patient-experience publications rarely included authors with patient experience• Patient authorship was significantly associated with increased publication accessibilityand exemplified HTA patient involvement values• Patients should be involved in planning and conducting patient-experience research, aswell as authoring patient-experience publications</p

Do Patient-Experience Publications Have Authors With Patient Experience?

Patient-experience research, defined as “capturing patients’ experiences, perspectives, needs, and priorities,” is increasingly valued, especially in health technology assessment (HTA). Our objective was to quantify patient-experience publications and patient authorship, compare publication accessibility, and evaluate alignment of patient authorship with HTA patient involvement values. This poster was presented at the 19th Annual Meeting of the International Society for Medical Publication Professionals (2023).</p

Diversity in Patient Authors: A Randomized Bibliographic Analysis

There is an urgent and passionate call to increase diversity, equity, and inclusion in scientific publishing. Consistent with these principles, patients are (co)authoring publications. However, little is known about patient-authored publications and patient authors. Our objective was to conduct the first study on patient authors to inform evidence-based authorship practices that promote diversity, equity, and inclusiveness. This poster was presented at the 19th Annual Meeting of the International Society for Medical Publication Professionals (2023).</p

Diversity in Patient Authors: A Randomized Bibliographic Analysis

Research presented at ISMPP Annual Meeting USA 2023This is the first study to show that most patient authors are women from high-incomecountries who are publishing in English</p

Development and Evaluation of a New Technological Way of Engaging Patients and Enhancing Understanding of Drug Tolerability in Early Clinical Development: PROACT

<p><b>Article full text</b></p> <p><br></p> <p>The full text of this article can be found here<b>. </b><a href="https://link.springer.com/article/10.1007/s12325-016-0335-4?view=classic">https://link.springer.com/article/10.1007/s12325-016-0335-4?view=classic</a></p><p></p> <p><br></p> <p><b>Provide enhanced content for this article</b></p> <p><br></p> <p>If you are an author of this publication and would like to provide additional enhanced content for your article then please contact <a href="http://www.medengine.com/Redeem/”mailto:[email protected]”"><b>[email protected]</b></a>.</p> <p><br></p> <p>The journal offers a range of additional features designed to increase visibility and readership. All features will be thoroughly peer reviewed to ensure the content is of the highest scientific standard and all features are marked as ‘peer reviewed’ to ensure readers are aware that the content has been reviewed to the same level as the articles they are being presented alongside. Moreover, all sponsorship and disclosure information is included to provide complete transparency and adherence to good publication practices. This ensures that however the content is reached the reader has a full understanding of its origin. No fees are charged for hosting additional open access content.</p> <p><br></p> <p>Other enhanced features include, but are not limited to:</p> <p><br></p> <p>• Slide decks</p> <p>• Videos and animations</p> <p>• Audio abstracts</p> <p>• Audio slides</p

Patient Involvement in Preparing Clinical Research Peer-Reviewed Publications or Results Summaries: A Systematic Review

<div><b>Objective</b></div><div>Although patient involvement in results reporting is being encouraged, relevant evidence must be assessed before developing best practice guidelines. Our objective was to conduct the first systematic literature review on the effects of patient involvement on results reporting.</div><div><br></div><div><b>Research design and methods</b></div><div>Patient experts and publication professionals co-created a PRISMA-P protocol (PROSPERO registration submitted). Using MeSH terms and OVID, we searched (10/09/2017) MEDLINE, EMBASE and Cochrane databases (all languages; 01/01/2015–10/09/2017) and secondary sources. Eligible articles had to report on the effects of having patients author or contribute to clinical research peer reviewed publications or summaries. The primary outcome was the number of articles investigating patient authorship or contribution to peer-reviewed publications. For included articles, we assessed bias risk (Newcastle-Ottawa Scale).</div><div><br></div><div><b>Results</b></div><div>Of the 105 database articles retrieved, 24 duplicates were removed. Title/abstract screening excluded 62 articles. From full-text screening of 19 articles, we could include 2. Both focused on the effects of patient involvement for preparing peer-reviewed publications. Evidence quality for each article was poor/fair (0 randomised controlled trials). Reported benefits of patient involvement included meeting funder requirements, critical and unique contributions, new research ideas, improved reporting, patient empowerment and new skill development (patients and researchers). Reported harms included the need for additional time, training, resources and budget. </div><div><br></div><div><b>Conclusions</b></div><div>This systematic review identified a major evidence gap that must be addressed to guide best practices for patient involvement in results reporting. Patients, sponsors and publication professionals could co-create a research priority list and use emerging evidence to draft interim guidelines for ethical and meaningful involvement of patients in results reporting.</div

Patient involvement...or not? Analysis of 'Patient Involvement' statements in clinical trial publications in The BMJ

<p><b>Objective</b></p> <p><i>In 2014, </i>The BMJ introduced a mandatory ‘Patient Involvement’statement in the Methods section of research articles. We investigated the extent of patient involvement described in clinical trial research publications in <i>The BMJ.</i> Our primary objective was to quantify patient authorship.</p><p><br></p> <p><b>Research design and methods</b></p> <p>We searched PubMed (journal: <i>The BMJ</i>; publication type: clinical trial; dates: 2015/01/01-2016/12/31) and electronically exported all retrieved articles. Non-research articles were removed. Two authors categorised patient involvement based on the verbatim ‘Patient Involvement’ and Acknowledgements sections in each publication. Results were cross-checked.</p><p><br></p> <p><b>Results</b></p> <p>Of the 62 articles retrieved, 10 were non-research articles. Reported patient involvement was generally low. Involvement was lowest for authorship (1.9%; 1/52) and highest for thanking patients for their participation (57.7%; 30/52).</p><p><br></p> <p><b>Conclusions</b></p> <p>Despite <i>The BMJ’s</i> requirement, reported patient involvement in clinical trial publications remains low. Patient authorship is being encouraged, but remains rare. Advocacy efforts for meaningful patient involvement during research, including publication planning and preparation, must continue.</p

Quality of life in advanced‐stage, asymptomatic, non‐bulky follicular lymphoma treated with rituximab shows significant improvement compared with watchful‐waiting

SummaryTraditionally, patients with asymptomatic, advanced‐stage follicular lymphoma were managed with a watchful‐waiting approach until disease progression. The ‘Watch and Wait’ Phase‐3 randomised international trial examined whether rituximab could delay the need for treatment and the effect on quality of life (QoL). In this article, we present the long‐term results of the QoL aspect of the trial. Patients were randomised to watchful‐waiting (Arm A), rituximab induction (Arm B) or rituximab induction followed by maintenance (Arm C). We present the QoL outcomes from 180 patients (Arm A), 188 patients (Arm C) and an exploratory analysis of 82 (Arm B) compared to 81 and 84 patients concurrently randomised to arms A and C. Arm C reported greater improvement in emotional well‐being overtime (Month 37, p = 0.0078) and were significantly more likely to feel in control of their situation than watchful‐waiting patients (Month 25, p = 0.0004; Month 37, p = 0.0476). Watchful‐waiting patients were significantly more likely to avoid thinking about their illness, did not find learning about their illness helped them and were more likely to attach unpleasant connotations to clinic visits (Month 7, p = 0.0032; Month 13, p = 0.0015; Month 25, p = 0.0104). These results demonstrate improved QoL scores in the induction and maintenance rituximab arm, indicating that rituximab was not detrimental to QoL and resulted in an improved QoL in some domains.</p

Additional file 6 of Development of consensus-driven SPIRIT and CONSORT extensions for early phase dose-finding trials: the DEFINE study

Additional file 6. SPIRIT-DEFINE and CONSORT-DEFINE items generation for Delphi survey: Table A6-1. Table A6-1. References supporting the proposed candidate items in the DEFINE Delphi survey

Additional file 10 of Development of consensus-driven SPIRIT and CONSORT extensions for early phase dose-finding trials: the DEFINE study

Additional file 10. List of candidate items to be discussed at the DEFINE Consensus meeting