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  1. Journalists and Friends of the National Library of Medicine-Research!America Workshop on Clinical Trials Bethesda, June 10, 2013 Ivan Oransky, MD Executive Editor, Reuters Health Co-Founder, Retraction Watch Treasurer, Association of Health Care Journalists @ivanoransky

  2. Themes • How do journalists use • Story ideas • History of a trial • What’s missing • Contact information • Context • What changes would make it even more useful? • Faster and more comprehensive updates • Easier search • Other data

  3. How Journalists Use

  4. A Great Source of Stories A lot of my better stories have come from It used to be that not registering a trial could be a source of a story. As a result this seems less likely to happen. It’s wonderfully useful for seeing if a trial has been changed. Matthew Herper, Forbes

  5. A Story Source …I've used it in writing about [a subject], to figure out who was doing a trial but hadn't been very public about it.  Anonymous author, freelancer

  6. History …I check the registrations of published trials to learn about the sites where the work was done and the protocol revisions along the way. It’s also sometimes helpful to see the previous trials of a drug and the other indications being explored or ones that were abandoned. Scott Hensley, NPR

  7. What Changed? …you can verify that the findings in a paper you want to report on were actually something that the investigators originally set out to study. If study results focus only on secondary outcomes, almost certainly the primary outcomes failed. Pete Schmidt

  8. What’s Missing? …looking for trials that have [been] completed but not reported results. The FDA Amendment Act 2007 that was supposed to fix this has been widely ignored. Ben Goldacre, author and co-founder of

  9. Contact Information When several other approaches have failed, I've used to look for contact info, especially an email address, of a researcher. It sometimes works -- just by searching the site on the person's name. Also, I find the summary of results of completed trials to be helpful. Dan Keller, freelancer (Oncology Times, et al)

  10. Outside Sources I mainly use for two things--contacting researchers who know something about the drug or treatment I'm writing about and for details on the designs of trials, how many study sites there are, for example, and where they are. Brenda Goodman, freelancer and AHCJ medical studies topic leader

  11. What Else Is Out There? …if a source tells you about a new drug in the pipeline, you could use to see what other kinds of drugs are being tested for the same condition (e.g. if you're writing about a new chemo in a Phase II study for patients with recurrent brain cancer, it might be useful to know that that those patients are eligible for a vaccine trial.) Sometimes, there are conflicts among investigators who run clinical trials who are, in effect, competing for patients to enroll. Elaine Schattner, oncologist and freelancer

  12. Big Data • I've seen business reporters with set searches for company names so they can see when trials start/end/get halted/etc.  • Also worth noting that the back end is really good for pulling down/manipulating data in bulk. Brian Reid, former Bloomberg reporter, now PR at WCG

  13. What Could Be Better?

  14. Clinical Trial Acronyms Lots of useful information. For example, I got the acronyms for all the trials -- BLISS-76, SABLE, EMBRACE, etc. That gave me keywords for a PubMed search. Norman Bauman, freelancer

  15. What Could Be Better? …it’s too hard to search for instances where trials have been recently updated. Making it more easy to search for trials that have, say, been stopped or had major changes in the past year would open up new areas of easy journalism. Matthew Herper, Forbes

  16. What Could Be Better? • delays in trial registration • delays in reporting results and • the complexity of the results' findings Rob Logan, NLM; former journalist and journalism professor

  17. How Could It Be Better? I wish it were easier to learn if the study results were ever published. The addition of the Study Results section is helpful, but certainly not adequate for the general public. It may just be me, but more often than not the study results I am looking for are not there and/or not always easy to interpret. Sue Rochman, contributing writer/editor, Cancer Today

  18. How Could It Be Better? I found that the search page was more complicated and difficult than PubMed (or at least not as familiar), but it lets you select fields in the same way. In order to use it efficiently, I had to spend some time (about an hour) figuring it out, but it was worth it. Like everything in computers, if you miss one little check box, you can get the wrong results, and you have to go through it very carefully to find your mistake. Norman Bauman, freelancer

  19. What Could Be Better? • There isn't the informed consent [form] that patients must sign (and it would be interesting to see what does the trial promise to achieve)   • There isn't any information on insurance coverage for adverse effects of the trial and duration of covered follow up after the trial is finished looking for delayed adverse effects. Amelia Beltramini, freelancer

  20. What Could Be Better? I think they should really press sponsors to submit results. The results tabs are empty for most studies in my space. I believe this requirement exists but NLM has a hard time enforcing it… Gabrielle Strobel,

  21. What Could Be Better? … Also, some large development programs, for example the bapineuzumab therapeutic antibody for Alzheimer's, show up with multiple trials. That is fine but it is also confusing to make out exactly which trial is for what and whether patients overlap and what is supposed to have results and what not etc. It would be good to group the individual trials within a given development program in a more user-friendly way.  Gabrielle Strobel,

  22. What Could Be Better? Ability to find out how much is being spent on trials in a particular area Anonymous freelancer

  23. Acknowledgments/Contact Info • Thanks to: • Membership of the Association of Health Care Journalists • Nancy Lapid, Reuters Health • Contact: • • @ivanoransky