Use of PubMed Commons – Still not so Common?

<div><b>Objective</b></div><div>PubMed Commons, launched as a 1-year pilot on October 22, 2013, was designed to provide a forum for post publication peer review. Our previous study showed that use of PubMed Commons during the pilot was extremely low. For this study, our aim was to investigate whether the use of PubMed Commons had changed after the pilot period. </div><div><br></div><div><b>Research design and methods</b></div><div>We conducted an e-search of PubMed using the “has_user_ comments [filter]” to capture all publications (November 30, 2014, to December 19, 2017) with comments. These publications were then sorted by language, species, access, type, year, and journal. We reviewed a random sample (10%) of publications to categorize comments according to the source and nature of the comment (including posting of plain-language publication summaries).</div><div><br></div><div><b>Results</b></div><div>Use of PubMed Commons remains extremely low. Of all the publications listed in PubMed during or after the pilot period, <0.1% received comments. In our first study, 1,771 publications had comments. In this study, approximately 1,366 publications per year received comments, which is only 77% of the initial usage rate. Of the 5,874 publications receiving comments during the tenure of PubMed Commons, 66% (3,882/5,874) were based on human studies, 34% were open access (2,006/5,874), and 6% (370/5,874) were published in 119 core clinical journals.</div><div><br></div><div><b>Conclusions</b></div><div>The promise of PubMed Commons as a forum to help advance science through effective post-publication communication remains. Use of PubMed Commons,m however, is extremely low and has not increased since the pilot. PubMed Commons use may increase by meeting other emerging needs (eg, posting data, sharing information and links, providing free access to plain-language publication summaries).</div

Transparency and Completeness in the Reporting of Stakeholder Involvement in the Development and Reporting of Research Reporting Guidelines

<p><b>Objective:</b> The Guidance for Developers of Health Research Reporting Guidelines recommend multidisciplinary stakeholder involvement, transparent and complete reporting, and updating guidelines based on feedback. Developers are accountable for stakeholder engagement, but how broad and meaningful is such engagement? Our objective was to provide empirical feedback to developers by investigating (1) the involvement of those ultimately affected by guidelines (eg, patients and carers) and regular end users of guidelines (eg, publication professionals), and (2) the transparency and completeness of reporting stakeholder involvement.</p> <p><b>Design:</b> For this prospective study, conducted from September 2016 to January 2017, we included every reporting guideline for the main study types, as listed on the EQUATOR Network website. We pilot-tested a standardized data collection spreadsheet to extract data from the corresponding guideline publications. We quantified patient, carer, and publication professional involvement and used statisticians (listed as stakeholders in the Guidelines) as a control group. We assessed reporting transparency and completeness using the AGREE Reporting Checklist for documenting stakeholder involvement. For qualitative insights, we interviewed leaders from nonprofit, international, patient advocacy (International Alliance of Patients’ Organizations [IAPO]) and publication professional (Global Alliance of Publication Professionals [GAPP]) organizations.</p> <p><b>Results:</b> Of the 33 guideline publications, the mean (SD) number of authors was 9 (SD 5.7, min 3, max 30) (median, 7; IQR, 5-11) and the mean (SD) number of working group members was 45 (SD 38.4, min 5, max 147) (median, 30; IQR, 23-43). Statisticians were authors for 24% (8/33) of the publications and were working group members for 15% (5/33). Patients, carers, and publication professionals were rarely identified, either as authors (0, 0, and 0, respectively) or working group members (0, 1 [3%], and 0, respectively). Reporting stakeholder involvement was deficient (eg, for statistician involvement, only 25% of publications met AGREE Recommendations). Leaders from IAPO and GAPP were not aware of having been invited to participate in developing guidelines, but thought that their stakeholders could provide unique and important insights. They encourage guideline developers to contact them to facilitate meaningful involvement.</p> <p><b>Conclusions:</b> Guideline developers have rarely involved stakeholders affected by guidelines (patients, carers) or those regularly using guidelines (publication professionals) in the development process. The involvement of these key stakeholders could enhance the credibility, dissemination, and use of guidelines. If patients, carers, and publication professionals were represented by other stakeholders (which is not ideal given potential conflicts of interest), this was not documented; readers do not know who represented whom. The transparency and completeness of reporting of stakeholder involvement should be improved.</p

Who engages with patient-centered, peer-reviewed publications? Tweeting of JAMA Patient Pages

<p><b>Objective:</b> Since 1998, JAMA has published peer-reviewed Patient Pages to help healthcare professionals (HCPs) promote credible information to patients; with growing patient-empowerment and access to social media, the public may now be the primary promotors. We investigated engagement with JAMA’s Patient Pages via Twitter.</p> <p><b>Research design and methods:</b> For this controlled cross-sectional analysis, sequential (November 2013–November 2015; n=86) free-access JAMA Patient Pages were matched for topic and time to JAMA articles (controlling for journal; n=86) and to free‑access, MEDLINE®-listed articles (controlling for access; n=86). Altmetric.com and Twitter data were analysed by an independent academic statistician.</p> <p><b>Results:</b> For Patient Pages (34 vs 8; P<.001), JAMA articles (28 vs 9; P<.001), and MEDLINE® articles (1 vs 0; P=.002), the median number of tweets was significantly higher for the public vs HCPs. The median number of Tweeters, median number of followers, median Attention Scores, and percent of articles having the US as the top Tweeting country were significantly higher for Patient Pages (49; 226,719; 35; 93%) and JAMA articles (47; 214,773; 42; 88%) vs MEDLINE® articles (1; 183; 1; 22%); for each outcome, the difference between Patient Pages or JAMA articles vs MEDLINE® was P<.001; no significant differences were detected between Patient Pages vs JAMA articles.</p> <p><b>Conclusions:</b> The public may be more powerful promoters of peer‑reviewed publications, whether patient-centric or not, than HCPs. Tweeters from the US were the strongest promoters of JAMA’s patient‑centric, peer-reviewed publications.</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