Frequency and format of clinical trial results dissemination to patients: a survey of authors of trials indexed in PubMed | BMJ Open

Abstract:  Objective Dissemination of research findings is central to research integrity and promoting discussion of new knowledge and its potential for translation into practice and policy. We investigated the frequency and format of dissemination to trial participants and patient groups.

 

Design Survey of authors of clinical trials indexed in PubMed in 2014–2015.

 

Results Questionnaire emailed to 19?321 authors; 3127 responses received (16%). Of these 3127 trials, 2690 had human participants and 1818 enrolled individual patients. Among the 1818, 498 authors (27%) reported having disseminated results to participants, 238 (13%) planned to do so, 600 (33%) did not plan to, 176 (10%) were unsure and 306 (17%) indicated ‘other’ or did not answer. Of the 498 authors who had disseminated, 198 (40%) shared academic reports, 252 (51%) shared lay reports, 111 (22%) shared both and 164 (33%) provided individualised study results. Of the 1818 trials, 577 authors (32%) shared/planned to share results with patients outside their trial by direct contact with charities/patient groups, 401 (22%) via patient communities, 845 (46%) via presentations at conferences with patient representation, 494 (27%) via mainstream media and 708 (39%) by online lay summaries. Relatively few of the 1818 authors reported dissemination was suggested by institutional bodies: 314 (17%) of funders reportedly suggested dissemination to trial participants, 252 (14%) to patient groups; 333 (18%) of ethical review boards reportedly suggested dissemination to trial participants, 148 (8%) to patient groups. Authors described many barriers to dissemination.

 

Conclusion Fewer than half the respondents had disseminated to participants (or planned to) and only half of those who had disseminated shared lay reports. Motivation to disseminate results to participants appears to arise within research teams rather than being incentivised by institutional bodies. Multiple factors need to be considered and various steps taken to facilitate wide dissemination of research to participants.

Feasibility of Using Real-World Data to Replicate Clinical Trial Evidence | Electronic Health Records | JAMA Network Open | JAMA Network

“Question  What percentage of clinical trials published in high-impact journals in 2017 generated evidence that could feasibly be replicated using observational methods and data sources?

Findings  In this cross-sectional study of 220 clinical trials published in high-impact journals in 2017, only 15% could feasibly be replicated using currently available real-world data sources.

Meaning  This study suggests that, although the increasing use of real-world evidence in medical research presents opportunities to supplement or even replace some clinical trials, observational methods are not likely to obviate the need for traditional clinical trials….”

SUPP.AI by AI2

“Dietary and herbal supplements are popular but unregulated. Supplements can interact or interfere with the action of prescription or over-the-counter medications. Currently, it is difficult to find accurate and timely scientific evidence for these interactions.

To solve this problem, Supp.AI automatically extracts evidence of supplement and drug interactions from the scientific literature and presents them here….

To find out more about this work, please read our publication….

Supp.AI is a free service of the non-profit Allen Institute for AI….”

MedComms Medical Communications Community | networking, jobs, careers, events, information services | New Jersey, San Francisco, Basel, Singapore, Oxford, Manchester, London

“To mark Open Access Week 2019 we’ll have the authors presenting their results from several recent, valuable, published research projects around the topic of open access publication of pharmaceutical industry research and the role of professional medical writers. The talks will be filmed and archived at NetworkPharma.tv but we’ll also look forward to lively discussion between speakers and audience on the day. This event is free of charge for any members of this MedComms Networking Community, or anyone who would like to learn more about the MedComms business. Everyone welcome….”

Weekly digest: what’s happening in open science? – Open Pharma

“Who are clinical trials for – doctors, pharma companies or patients? Open Pharma believes that clinical trials are for everyone and that findings should be transparent and made accessible in a timely manner. To celebrate Open Access Week 2019, Open Pharma has teamed up with Pint of Science in a pioneer event titled ‘Clinical trial transparency – let’s talk’, which will take place on Wednesday 23 October from 19:30 to 21:30 at St Aldates Tavern in Oxford.

The event features highlights from the COMPare study presented by Dr Henry Drysdale and an overview of the progress Open Pharma has made so far and of its future goals. After a quick break to refill any empty pint glasses, audience members will have the chance to direct any questions to our expert panel, namely Professor Trish Greenhalgh, Nick DeVito, Joe Adams, Georgia Richards and Open Pharma’s own Tim Koder….”

New NIH-funded translational research centers to speed, diversify Alzheimer’s drug discovery | National Institutes of Health (NIH)

“The Accelerating Medicines Partnership-Alzheimer’s Disease (AMP-AD) program’s open-science enterprise, which has provided more than 500 new candidate targets for Alzheimer’s disease, served as the foundation for the new centers.

“Through these centers, NIH will expand the use of open-science and open-source principles to de-risk novel drug targets with the goal of facilitating the development of new treatments for Alzheimer’s,” said NIH Director Francis S. Collins, M.D., Ph.D….”

New NIH-funded translational research centers to speed, diversify Alzheimer’s drug discovery | National Institutes of Health (NIH)

“The Accelerating Medicines Partnership-Alzheimer’s Disease (AMP-AD) program’s open-science enterprise, which has provided more than 500 new candidate targets for Alzheimer’s disease, served as the foundation for the new centers.

“Through these centers, NIH will expand the use of open-science and open-source principles to de-risk novel drug targets with the goal of facilitating the development of new treatments for Alzheimer’s,” said NIH Director Francis S. Collins, M.D., Ph.D….”

Open data on industry payments to healthcare providers reveal potential hidden costs to the public | Nature Communications

Abstract:  Healthcare industry players make payments to medical providers for non-research expenses. While these payments may pose conflicts of interest, their relationship with overall healthcare costs remains largely unknown. In this study, we linked Open Payments data on providers’ industry payments with Medicare data on healthcare costs. We investigated 374,766 providers’ industry payments and healthcare costs. We demonstrate that providers receiving higher amounts of industry payments tend to bill higher drug and medical costs. Specifically, we find that a 10% increase in industry payments is associated with 1.3% higher medical and 1.8% higher drug costs. For a typical provider, for example, a 10% or $25 increase in annual industry payments would be associated with approximately $1,100 higher medical costs and $100 higher drug costs. Furthermore, the association between payments and healthcare costs varies markedly across states and correlates with political leaning, being stronger in more conservative states.

Que faut-il faire pour que la science soit plus ouverte? (What needs to be done to make science more open?)

From Google’s English: 

“Open science is the practice of making research publications and data freely available. It takes advantage of the digital transition to develop open access to publications and, to the fullest extent possible, to research data.”