RWJF Awards $1.9 Million Grant to PatientsLikeMe to Create World’s First Open Research Platform to Develop Patient-Centered Health Outcome Measurements | PatientsLikeMe

“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.”

DO NOT PUBLISH, or Sometimes, open data/open access not ideal – UC Berkeley Library News

“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?”

Open Science Prize announces epidemic tracking tool as grand prize winner | National Institutes of Health (NIH)

“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.”

Survey: Patients Regard Open Access to Their Medical Records as Critical to Receiving High Quality Health Care | Business Wire

“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.”

“Fostering Open Science in Global Health – the case of datasharing in Public Health Emergenices“ overview of the CVV Workshop at the World Health Summit | Centre Virchow-Villermé

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)

Open but 

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.

Context matters

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:

http://blogs.bmj.com/bmj/2016/10/25/peter-grabitz-et-al-how-can-we-improve-data-sharing-in-public-health-emergencies/