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Learn more about OpenTrials
Open Knowledge is developing Open Trials, an open, online database of information about the world’s clinical research trials. We are funded by The Laura and John Arnold Foundation through the Center for Open Science. The project, which is designed to increase transparency and improve access to research, will be directed by Dr. Ben Goldacre, an internationally known leader on clinical transparency.

OpenTrials is building a collaborative and open linked database for all available structured data and documents on all clinical trials, threaded together by individual trial. With a versatile and expandable data schema, it is initially designed to host and match the following documents and data for each trial:

Registry entries
Links, abstracts, or texts of academic journal papers
Portions of regulatory documents describing individual trials
Structured data on methods and results extracted by systematic reviewers or other
Researchers
Clinical Study Reports
Additional documents such as blank consent forms, blank case report forms, and protocols

The intention is to create an open, freely re-usable index of all such information, to increase discoverability, facilitate research, identify inconsistent data, enable audits on the availability and completeness of this information, support advocacy for better data and drive standards around open data in evidence-based medicine.
science  medicine  sciencepublishing  openmedicine  openscience  research  search 
october 2017 by juliusbeezer
Stop the EMA Backsliding on Open Clinical Data [Updated] - Open Enterprise
Back in April, I noted that we had potentially a big win in the form of the opening up of drug safety data in the light of recent scandals that have seen big pharma companies hiding adverse effects of their products, often with fatal results. As I warned, we weren't there yet, since the drug companies really don't want their dirty washing for all to see, and they have been lobbying extremely hard to water down the provisions. And in fact, it seems they have succeeded, as the All Trials Web site explains:

The good proposals in the European Medicines Agency’s (EMA) draft policy on sharing clinical trial data could be at risk.

The EMA has produced a further draft of the policy which would introduce barriers to access to clinical trial data that would make the job of researchers who want to scrutinise it almost impossible.

The policy introduces terms of use which say that researchers can access the data on screen only with printing, sharing or saving of the data forbidden.
drugs  linkrot  openmedicine  open  eu 
march 2017 by juliusbeezer
OpenTrials: towards a collaborative open database of all available information on all clinical trials | Trials | Full Text
Hosting a broad range of data and documents presents some challenges around curation, especially because different sources of structured data will use different formats and different dictionaries. Although we will exploit available mapping between different data schemas and dictionaries, we do not expect to necessarily make all sources of all structured data on all trials commensurable and presentable side by side. For example, intervention may be described in free text or as structured data using various different dictionaries, and even sample size may be labelled in different ways in different available datasets, not all of which can necessarily be parsed and merged. For simplicity, we are imposing a series of broad categories as our top-level data schema, following the list given above. This is best thought of as a thread of documents on a given trial, where a “document” means either an actual physical document (such as a consent form or a trial report) or a bundle of structured data for a trial (such as the structured results page from a ClinicalTrials.gov entry in XML format or a row of extracted data with accompanying variable names for a systematic review). This is for ease of managing multiple data sources, providing multiple bundles of structured data about each trial in multiple formats, each of which may be commonly or rarely used.
openmedicine  opendata  sciencepublishing  search  terminology  Dictionary  OA 
october 2016 by juliusbeezer
About
OpenTrials is building a collaborative and open linked database for all available structured data and documents on all clinical trials, threaded together by individual trial. With a versatile and expandable data schema, it is initially designed to host and match the following documents and data for each trial:

Registry entries
Links, abstracts, or texts of academic journal papers
Portions of regulatory documents describing individual trials
Structured data on methods and results extracted by systematic reviewers or other
Researchers
Clinical Study Reports
Additional documents such as blank consent forms, blank case report forms, and protocols

The intention is to create an open, freely re-usable index of all such information, to increase discoverability, facilitate research, identify inconsistent data, enable audits on the availability and completeness of this information, support advocacy for better data and drive standards around open data in evidence-based medicine.
openaccess  openmedicine  medicine  sciencepublishing  indexing  database 
october 2016 by juliusbeezer
BMJ editor Fiona Godlee takes on corruption in science - Health - CBC News
As the editor of one of the oldest and most influential medical journals, Godlee is leading several campaigns to change the way science is reported, including opening up data for other scientists to review, and digging up data from old and abandoned trials for a second look.

She has strong words about the overuse of drugs, and the influence of industry on the types of questions that scientists ask, and the conclusions that are drawn from the evidence.

"It's not my job to be popular, I'm very clear about that," she says from her office in the historic British Medical Association building in central London.
sciencepublishing  opendata  openmedicine  commenting  agnotology 
april 2016 by juliusbeezer
Free Open Access Medical education (FOAM) for the emergency physician - Nickson - 2014 - Emergency Medicine Australasia - Wiley Online Library
FOAM is ‘free open-access med(ical ed)ucation’.[2, 3] As such, FOAM is a dynamic collection of resources and tools for lifelong learning in medicine, as well as a community and an ethos. FOAM is continually evolving and growing rapidly, and from anarchic beginnings is increasingly attracting interest from practicing clinicians, trainees, educators, researchers and publishers alike. This article defines FOAM, details its development and considers its role, particularly in relationship to scientific journals, textbooks and medical education as a whole...
FOAM is sometimes portrayed as being at loggerheads with ‘the establishment’, including traditional medical journals. We think this is overstated, and both social media and FOAM have a growing role in the post-publication analysis of scientific research and in bridging the gap between research and practice.

There has been a push from some quarters to make FOAM more ‘journal like’, and a common criticism of FOAM is that it is not peer reviewed in the traditional sense.[8] However, FOAM is not scientific research. Instead, FOAM is a useful way of disseminating, discussing, dissecting and deliberating over the products of that research...
Twitter® has been central to the development of the FOAM community.[7]
openmedicine  socialmedia  medicine  twitter  hippocrates 
november 2015 by juliusbeezer
Open Access, and why it matters to medical students. |
Students access research literature across both pre-clinical and clinical phases. In both instances, students are encouraged to consult a variety of sources, ranging from traditional textbooks to more current journal articles, with the aim of forming a solid and current knowledge base. Additionally, medical school curricula feature assignments where students are required to gain skills in searching and evaluating research literature. Since medical students encounter research output in a variety of ways, any methods which facilitate these process are encouraged.

OA allows medical students to draw on a wider array of research output than would otherwise be possible. Increasing journal numbers mean that university libraries are unable to afford subscriptions to quality indexed journals. Frequently a “perfect” article is found, only to soon realise it’s behind a paywall with no library journal subscription. The option of paying $US30-40 for access to single paper is rarely palatable for a student budget. For the same reason that OA is said to bring knowledge to developing nations, local medical students can have access to a wider array of research to incorporate into their knowledge base.
medicine  education  openaccess  openmedicine  openness 
november 2015 by juliusbeezer
Open Humans: Opening Soon!
The Open Humans Network, led by myself and Madeleine Ball of PersonalGenomes.org, attempts to break down health data silos through an online portal that will connect participants willing to share data about themselves publicly with researchers who are interested in using that public data and contributing their analyses and insight to it. The portal will showcase public health data and facilitate its exploration and download. The Open Humans Network ultimately hopes to revolutionize research by making it easy for anyone to participate in research projects and facilitating highly integrated, longitudinal health data. This portal will consist of three components: individual data profile pages, a public data explorer and a set of design guidelines for researchers seeking a collaborative data-sharing model.
open  opendata  openmedicine  healthcare  medicine  confidentiality  ethics  extrovertbias 
january 2015 by juliusbeezer
Open Humans Network - CTOvision.com
Open Humans Network is launching soon. Led by Jason Bobe and Madeleine Ball of PersonalGenomes.org, OHN attempts to break down health data silos through an online portal that will connect participants willing to share data about themselves publicly with researchers who are interested in using that public data and contributing their analyses and insight to it. The portal will showcase public health data and facilitate its exploration and download. The Open Humans Network ultimately hopes to revolutionize research by making it easy for anyone to participate in research projects and facilitating highly integrated, longitudinal health data.
healthcare  genetics  confidentiality  medicine  open  opendata  openmedicine  openness 
january 2015 by juliusbeezer
Editorial Policies
Open Health Data publishes data papers, which provide a concise description of a dataset and where to find it. Papers will only be accepted for datasets that authors agree to make freely available in a public repository. This means that they have been deposited in a data repository under an open licence (such as a Creative Commons Zero licence), and are therefore freely available to anyone with an internet connection, anywhere in the world.

A data paper is a publication that is designed to make other researchers aware of data that is of potential use to them for scientific and educational purposes. Data papers can describe deposited data from studies that have not been published elsewhere (including replication research) but also from studies that have previously been published in another journal. As such the data paper describes the methods used to create the dataset, its structure, its reuse potential, and a link to its location in a repository. It is important to note that a data paper does not replace a research article, but rather complements it.
opendata  openmedicine  openscience  sciencepublishing  OASPA 
march 2014 by juliusbeezer
Palepu_Anita_Open_Medicine.wmv
for editorial independence: great talk from Anita Palepu: on the founding of
openaccess  openmedicine 
october 2013 by juliusbeezer

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