“OICR-funded drug discovery project’s unique ‘open science’ business model is accelerating the search for a solution to lethal pediatric brain cancers Diffuse intrinsic pontine glioma (DIPG) is a lethal and inoperable brain cancer with a median survival of less than a year from diagnosis. Finding solutions to this disease is challenging due to its rarity, scientific complexity and its presentation in pediatric populations. An OICR-funded team of researchers, led by Dr. Aled Edwards from M4K Pharma, have developed new potential drug candidates for DIPG that they will test in animal models in the coming months. They’ve reached this milestone ahead of schedule, with fewer resources required than anticipated, by using an ‘open drug discovery’ approach – sharing their methods and data with the greater research community to streamline the drug discovery process….”
“Experts say the database of carefully curated medical guidelines is one of a kind, used constantly by medical professionals, and on July 16 will ‘go dark’ due to budget cuts.
The Trump Administration is planning to eliminate a vast trove of medical guidelines that for nearly 20 years has been a critical resource for doctors, researchers and others in the medical community. Maintained by the Agency for Healthcare Research and Quality [AHRQ], part of the Department of Health and Human Services, the database is known as the National Guideline Clearinghouse [NGC], and it’s scheduled to “go dark,” in the words of an official there, on July 16. Medical guidelines like those compiled by AHRQ aren’t something laypeople spend much time thinking about, but experts like Valerie King, a professor in the Department of Family Medicine and Director of Research at the Center for Evidence-based Policy at Oregon Health & Science University, said the NGC is perhaps the most important repository of evidence-based research available. “Guideline.gov was our go-to source, and there is nothing else like it in the world,” King said, referring to the URL at which the database is hosted, which the agency says receives about 200,000 visitors per month. “It is a singular resource,” King added. Medical guidelines are best thought of as cheatsheets for the medical field, compiling the latest research in an easy-to use format. When doctors want to know when they should start insulin treatments, or how best to manage an HIV patient in unstable housing — even something as mundane as when to start an older patient on a vitamin D supplement — they look for the relevant guidelines. The documents are published by a myriad of professional and other organizations, and NGC has long been considered among the most comprehensive and reliable repositories in the world. AHRQ said it’s looking for a partner that can carry on the work of NGC, but that effort hasn’t panned out yet. “AHRQ agrees that guidelines play an important role in clinical decision making, but hard decisions had to be made about how to use the resources at our disposal,” said AHRQ spokesperson Alison Hunt in an email. The operating budget for the NGC last year was $1.2 million, Hunt said, and reductions in funding forced the agency’s hand.”
“This document aims to clarify the key elements of open data and to serve as a proposal to institute and strictly implement a policy for climate change and disaster risk reduction-related data and information based on its articulated and internationally accepted definition in the Philippines. The document describes the different considerations for the Philippines in its decision to fully adopt, support and promote a policy for open data for DRR. Defining the standards in an open data law will mandate compliance to the key elements of open data, which include: availability in digital format of data, downloadable via the internet in bulk for ease of use; amenability to intermixing with other datasets through an interoperable format structure and machine-readability of digital files; freedom to use, reuse and redistribute, even on commercial basis; and a ‘no conditions’ rule on the use of open data, except for appropriate citation for due credit.”
“In July 2017, the Wellcome Trust updated their policy on the management and sharing of research outputs. This policy helps deliver Wellcome’s mission – to improve health for everyone by enabling great ideas to thrive. The University of Cambridge’s Research Data Management Facility invited Wellcome Trust to Cambridge to talk with their funded research community (and potential researchers) about what this updated policy means for them. On 5th December in the Gurdon Institute Tea Room, the Deputy Head of Scholarly Communication Dr Lauren Cadwallader, welcomed Robert Kiley, Head of Open Research, and David Carr, Open Research Programme Manager, from the Wellcome’s Open Research Team.
This blog summarises the presentations from David and Robert about the research outputs policy and how it has been working and the questions raised by the audience….”
“As preprints in medicine are debated, data on how preprints are used, cited, and published are needed. We evaluated views and downloads and Altmetric scores and citations of preprints and their publications. We also assessed whether Altmetric scores and citations of published articles correlated with prior preprint posting….Published articles with preprints had significantly higher Altmetric scores than published articles without preprints….”
“PatientsLikeMe has been awarded a $1.9 million grant from the Robert Wood Johnson Foundation (RWJF) to create the world’s first open-participation research platform for the development of patient-centered health outcome measures. The platform is part of a new open-science initiative that puts patients at the center of the clinical research process and will allow researchers to pilot, deploy, share, and validate new ways to measure diseases. An ‘idea worth spreading,’ the initiative will be spotlighted today in a presentation at TED2013 by Paul Wicks, Ph.D., PatientsLikeMe’s Research Director and a new TED Fellow.
Health outcome measures are typically developed by clinicians and researchers, and collect information that meet their needs. Linked with the PatientsLikeMe patient network, the new platform will help researchers develop health outcome measures that better reflect patients’ experiences with a disease, and assess health and quality of life in ways that matter to patients.”
“Some fields such as paleontology and archaeology have long maintained restrictions on the publication of site locations and promoted government policies and regulations to limit collection and trade in fossils, artefacts, and culturally sensitive and/or scientifically important material. Organizations such as the U.S. Forest Service do not disclose geospatial data in order to protect research sites. Other solutions include modification of research permits so that endangered species locations are not automatically uploaded into wildlife databases and masking such records on private land, as presently occurs in some states in the United States.
Is this relevant to any public health research? Other than personally identifiable information, what types of health data should not be made widely available?”
“A prototype online platform that uses real-time visualization and viral genome data to track the spread of global pathogens such as Zika and Ebola is the grand prize winner of the Open Science Prize
(link is external). The international team competition is an initiative by the National Institutes of Health, in collaboration with the Wellcome Trust and the Howard Hughes Medical Institute (HHMI). The winning team, Real-time Evolutionary Tracking for Pathogen Surveillance and Epidemiological Investigation(link is external), created its nextstrain.org(link is external)prototype to pool data from researchers across the globe, perform rapid phylogenetic analysis, and post the results on the platform’s website. The winning team will receive $230,000 to fully develop their prototype with NIH awarding $115,000 to the U.S. members of the winning team, and the Wellcome Trust and HHMI also contributing $115,000 to the winning team.”
“CAMPBELL, Calif.–(BUSINESS WIRE)–In the era of digital health, patients have very high expectations for medical information sharing, but they may not be aware of the health care industry’s current limitations. That’s according to a new digital health survey released today by Transcend Insights, a population health management company. The survey found that a vast majority of patients (97 percent) believe it is important for any health institution, regardless of type or location, to have access to their full medical history in order to receive high-quality care.
Patients were also asked to rate factors that are most important to receiving personalized care. Top priorities for patients included having access to their own medical records (92 percent) and the ability for care providers to easily share and receive important information about their medical history—wherever they needed treatment (93 percent).
Are these demands being met? The survey suggests that there could be a significant gap between the level of information sharing that patients expect and what is possible today. While the health care industry has undergone rapid digitization in the last decade, effectively sharing medical information and communicating across many different health care information technology systems — often referred to as interoperability — has remained elusive.
According to a recent interoperability study conducted by the American Hospital Association, only a quarter of all hospitals are able to functionally exchange (find, send, receive and use) clinical information with external providers. Another study published in the Journal of the American Medical Association found that only 34.8 percent of specialists receive information about a patient from their referring primary care physician (PCP), even when the PCP attempts to share patient records. In other words, data is not traveling with patients despite the importance that they place on open access to their information.”
On October 10 2016 the Centre Virchow-Villermé hosted a workshop on ‘Fostering Open Science in Global Health – the case of datasharing in Public Health Emergenices’. Featuring a diverse panel with representatives from different fields and different parts of the world, the workshop identified barriers and bottlenecks of an open approach to datasharing and science in general.
More than just data, more than just emergencies
Public health emergencies like the recent Zika and Ebola outbreaks illustrate the need for a more collaborative approach to research. Keeping information on screened viral genomes in situations where time counts the most is directly delaying the development of adequate responses.
However, Katherine Littler from the Wellcome Trust pointed out very early in the workshop ‘What is good for Public Health Emergencies is good for any research’, ‘There is no reason to hold information back.’ Comments from the audience sounded even more drastic: ‘There are no other reason for not sharing research data but prestige or selfishness.’
Katherine Littler of the Wellcome Trust describing how much more effort is needed to change practises in science. (Image: World Health Summit)
Dr Ali Sié, a researcher from Nuna in Burkina Faso generally supported ‘Open Science’ as a concept. Nevertheless, immediate sharing of clinical trial data would lead to even greater North-South inequalities in the research communities. He argued that those collecting data are not necessarily those with the biggest computing power. When making raw data directly acces- and processible, researchers in the global north could use technological expertise and piggy back on this and leverage the data faster than those who collected it in the global south.
As long as scientific reputation is based on publications in high impact journals, sharing is not incentivized. A paradigm shift in recognizing the value of shared data sets is highly needed.
Dr Diallo from the Guinean Ministry of Health and Professor at the University of Conakry pointed out that data itself is only valuable when seen in the context of its creation. The community aspect of research, especially in outbreak situation, needs to be considered when opening datasets to the public.
Sceptisism meets interest – impressions from the workshop (Image: World Health Summit)
How to open science
Eventhough data and information on trials are technically available, they are often spread out on the Internet and difficult to find. ‘Open Trials‘, an initiative by Open Knowledge International aims to do something about this issue by collecting ‘all the data on all the trials, Linked.’ They launched the public beta version on our workshop.
Researchers, the private sector, as well as government representatives present agreed, that in fact early career researchers need to sustain the movement in favour of more open and collaborative science as the default option within academia. Some questions remain unanswered – but the Centre Virchow-Villermé remains committed to offer a platform of exchange to discuss and support a shift in current practises.
You can read more about the workshop in this BMJ Blog: