WHO releases data.who.int

Posted on May 26, 2023 by OATP primary

“For 75 years, the World Health Organization (WHO) has been dedicated to promoting health, keeping the world safe and serving the vulnerable. The use of data as the foundation for evidence-based decision-making has been central to WHO’s mission. Today, there are more opportunities than ever to harness the power of data. Yet progress is uneven, with global disparities in capacity for health data collection, communication and access. The COVID-19 pandemic has magnified the urgent need for the public and policymakers to have access to timely, robust and reliable data.

Recognizing these challenges, WHO is proud to announce a transformative digital platform, data.who.int, a one-stop shop for health data. Data.who.int fulfills WHO’s commitment to provide health data as a public good; it is powered by the ambitious technologies of WHO’s World Health Data Hub, delivering an end-to-end solution for WHO data processes. From collection to use, the World Health Data Hub provides a world class experience leveraging innovative technology to address data challenges….”

NIHR tops international chart for clinical trial transparency | NIHR

Posted on May 8, 2023 by peter.suber's bookmarks

“The NIHR has been recognised as the world’s most transparent research funding body.

New analysis produced by TranspariMED shows the NIHR is the only research funder in the world to have adopted all 11 of the World Health Organisation’s recommendations for maximising clinical trial transparency and minimising waste.

These include:

making all clinical trial results public within 12 months
having specific policies to prevent waste in research and speed up the development of new treatments
requiring researchers to make key data available on public trial registries and publish their results in scientific journals
monitoring whether researchers are following best practices, and sanctioning those that do not…”

WHO releases the largest global collection of health inequality data

Posted on April 23, 2023 by OATP primary

“Today, WHO is launching the Health Inequality Data Repository, the most comprehensive global collection of publicly available disaggregated data and evidence on population health and its determinants. The repository allows for tracking health inequalities across population groups and over time, by breaking down data according to group characteristics, ranging from education level to ethnicity.

The data from the repository show that, in just a decade, the rich-poor gap in health service coverage among women, newborns and children in low- and middle-income countries has nearly halved. They also reveal that, in these countries, eliminating wealth-related inequality in under-five mortality could help save the lives of 1.8 million children.

The Health Inequality Data Repository (HIDR) includes nearly 11 million data points and consists of 59 datasets from over 15 sources. The data include measurements of over 2000 indicators broken down by 22 dimensions of inequality, including demographic, socioeconomic and geographical factors. Topics covered include: the Sustainable Development Goals (SDGs); COVID-19; reproductive, maternal and child health; immunization; HIV; tuberculosis; malaria; nutrition; health care; non-communicable diseases and environmental health….”

Open Source Programme Offices (OSPOs) in the UN System – A Spotlight on WHO. 15-16 September 2022 | 77th United Nations General Assembly (UNGA)

Posted on September 6, 2022 by OATP primary

“…Our first side-event will cover the highly anticipated launch of the Open Source Programme Office (OSPO) at the World Health Organization, which is the first OSPO in the entire UN system. Panelists from WHO, GitHub, and the United Nations Envoy on Technology will discuss the technical aspects and the vision of the WHO OSPO, why an OSPO is a major step forward for how WHO engages with open source technologies, and how an OSPO in the UN system can contribute to more equitable technology and inclusive economic growth….”

hosted by GitHub Social Impact, Tech for Social Good

Adoption of World Health Organization Best Practices in Clinical Trial Transparency Among European Medical Research Funder Policies | Global Health | JAMA Network Open | JAMA Network

Posted on August 2, 2022 by OATP primary

Abstract: Importance Research funders can reduce research waste and publication bias by requiring their grantees to register and report clinical trials.

Objective To determine the extent to which 21 major European research funders’ efforts to reduce research waste and publication bias in clinical trials meet World Health Organization (WHO) best practice benchmarks and to investigate areas for improvement.

Design, Setting, and Participants This cross-sectional study was based on 2 to 3 independent assessments of each funder’s publicly available documentation and validation of results with funders during 2021. Included funders were the 21 largest nonmultilateral public and philanthropic medical research funders in Europe, with a combined budget of more than US $22 billion.

Exposures Scoring of funders using an 11-item assessment tool based on WHO best practice benchmarks, grouped into 4 broad categories: trial registries, academic publication, monitoring, and sanctions. Funder references to reporting standards were captured.

Main Outcomes and Measures The primary outcome was funder adoption or nonadoption of 11 policy and monitoring measures to reduce research waste and publication bias as set out by WHO best practices. The secondary outcomes were whether and how funder policies referred to reporting standards. Outcomes were preregistered after a pilot phase that used the same outcome measures.

Results Among 21 of the largest nonmultilateral public and philanthropic funders in Europe, some best practices were more widely adopted than others, with 14 funders (66.7%) mandating prospective trial registration and 6 funders (28.6%) requiring that trial results be made public on trial registries within 12 months of trial completion. Less than half of funders actively monitored whether trials were registered (9 funders [42.9%]) or whether results were made public (8 funders [38.1%]). Funders implemented a mean of 4 of 11 best practices in clinical trial transparency (36.4%) set out by WHO. The extent to which funders adopted WHO best practice items varied widely, ranging from 0 practices for the French Centre National de la Recherche Scientifique and the ministries of health of Germany and Italy to 10 practices (90.9%) for the UK National Institute of Health Research. Overall, 9 funders referred to reporting standards in their policies.

Conclusions and Relevance This study found that many European medical research funder policy and monitoring measures fell short of WHO best practices. These findings suggest that funders worldwide may need to identify and address gaps in policies and processes.

Medical research funders across Europe tighten rules on clinical trial reporting

Posted on August 2, 2022 by OATP primary

“Eight of the 21 largest public and philanthropic medical research funders in Europe are stepping up their efforts to improve clinical reporting, following an assessment that found widespread gaps in existing research waste safeguards.

At present, many academic clinical trials in Europe fail to make their results public, wasting taxpayers’ money and leaving large gaps in the medical evidence base.

The public institutions that hand out money to medical researchers can prevent such waste by putting into place eleven safeguards recommended by the World Health Organisation. …”

WHA clinical trial resolution: draft text now public

Posted on May 24, 2022 by peter.suber's bookmarks

“The World Health Organization today published the draft text of the clinical trial resolution being debated at the ongoing World Health Assembly.

The resolution’s overall aim is to improve the coordination, design, conduct and reporting of clinical trials worldwide. It was partly spurred by the realisation that hundreds – maybe thousands – of Covid clinical trials have ended up as costly research waste….

Promoting, as appropriate, measures to facilitate the timely reporting of both positive and negative interpretable clinical trial results in alignment with the WHO joint statement on public disclosure of results from clinical trials and the WHO joint statement on transparency and data integrity, including through registering the results on a publicly available clinical trial registry within the [global trial registry network] ICTRP, and encouraging timely publication of the trial results preferably in an open-access publication.

Exploring measures during public health emergencies of international concern to encourage researchers to rapidly and responsibly share interpretable results of clinical trials, including negative results, with national regulatory bodies or other appropriate authorities, including WHO for clinical guideline development and emergency use listing (EUL), to support rapid regulatory decision-making and emergency adaptation of clinical and public health guidelines as appropriate, including through pre-print publication. …”

Why did clinical trial registries fail to prevent Covid research chaos?

Posted on May 17, 2022 by OATP primary

“There is a long-standing global ethical obligation to register all trials before they start, shored up by regulatory requirements in some jurisdictions. Data from 18 registries worldwide feed into the WHO-managed International Clinical Trials Registry Platform (ICTRP), providing a continuously updated overview of who is researching what, when, where and how – at least in theory.

If the registry infrastructure had worked and been used as intended, much of the COVID-19 research chaos would have been avoided.

For example, researchers considering launching a hydroxychloroquine trial could have searched ICTRP and discovered that the drug was already being investigated by numerous other trials. Those researchers could accordingly have focused on investigating other treatment options instead, or aligned their outcome measures with existing trials. …

The global registry infrastructure has long been inadequately supported by legislators and regulators, and is woefully underfunded.

This persistent neglect of the world’s only comprehensive directory of medical research led to costly research waste on an incredible scale during the pandemic.

The WHO recommends that member states should by law require every interventional trial to be registered and reported. In addition, WHO recommends that all trial results should be made public specifically on a registry within 12 months, and that registry data should be kept up to date.

By enforcing these three simple rules, regulators would ensure that there is a comprehensive, up-to-date global database of all trials and their results.

In reality, existing laws in the EU and the US only cover a small minority of trials and are not being effectively enforced, while many other jurisdictions have no relevant laws at all. …”

WHA 75: UK draft resolution on Strengthening Clinical Trials to Improve Public Health – Knowledge Ecology International

Posted on April 11, 2022 by peter.suber's bookmarks

“On 30 March 2022, Knowledge Ecology International (KEI) published the text of the draft resolution on social media. The text of the UK draft resolution on Strengthening Clinical Trials to Improve Public Health can be found here: Strengthening Clinical Trials to Improve Public Health – zero draft …”

Open Access Publishing: Issues and Way Forward – Predatory Journals and Conferences

Posted on January 30, 2022 by peter.suber's bookmarks

“One of the major challenges the world has faced the past two years has been the onset of the COVID-19 pandemic. With scientists putting up lot of research on COVID, the World Health Organization (WHO) came up with a WHO: COVID-19 Literature on corona virus disease. This database provides a way for the general public, along with scientists, to check the scientific literature on COVID-19, in one place, and this also results in wider reach/dissemination.

However, we do not have a common database for other important research areas concerning the general public, such as “Cancer Research” or “Climate Change”. When we say open access, the main aim should be open science to all, and we need more such databases by international agencies like the United Nations to collate research articles on important areas such as the 17 UN Sustainable Development Goals, which should be the need of the hour. Such initiatives will help in the real dissemination of science to the general public, and give authors of important research contributions, the visibility they deserve. This will be unlike publishers asking authors to promote their articles and measuring them with their commercial metrics….”

Changes in Users Trends Before and During the COVID-19 Pandemic on WHO’s Online Learning Platform

Posted on November 21, 2021 by peter.suber's bookmarks

Abstract: OpenWHO provides open access, online, free and real time learning responses to health emergencies. Before the pandemic, courses on 18 diseases were provided. The increase to 38 courses in response to COVID-19 have led to a massive increase in the number of new learners. As a result, the COVID-19 pandemic affected learners’ trends. This paper presents initial findings of changes perceived in the use and user groups’ attendance to the World Health Organization’s (WHO) health emergency learning platform OpenWHO. Enrolment statistics were based on data collected in December 2019 and March 2021. A descriptive analysis was conducted to explore changes in the usage pattern of the platform. Several user characteristics shifted between before and during the pandemic. More women, younger and older learners joined the learning during the pandemic. Public health education leaned toward a more equitable reach including previously underrepresented groups.

WHO starts data-sharing effort to prevent pandemics. Will nations cooperate? | South China Morning Post

Posted on September 2, 2021 by OATP primary

“WHO Hub for Pandemic and Epidemic Intelligence opens in Berlin backed by initial US$100 million from Germany

It aims to pool global disease data, and produce tools to predict outbreaks – but is reliant on countries taking part.”

Joint Statement on transparency and data integrity International Coalition of Medicines Regulatory Authorities (ICMRA) and WHO

Posted on May 8, 2021 by peter.suber's bookmarks

“ICMRA1 and WHO call on the pharmaceutical industry to provide wide access to clinical data for all new medicines and vaccines (whether full or conditional approval, under emergency use, or rejected). Clinical trial reports should be published without redaction of confidential information for reasons of overriding public health interest….

Regulators continue to spend considerable resources negotiating transparency with sponsors. Both positive and negative clinically relevant data should be made available, while only personal data and individual patient data should be redacted. In any case, aggregated data are unlikely to lead to re-identification of personal data and techniques of anonymisation can be used….

Providing systematic public access to data supporting approvals and rejections of medicines reviewed by regulators, is long overdue despite existing initiatives, such as those from the European Medicines Agency and Health Canada. The COVID-19 pandemic has revealed how essential to public trust access to data is. ICMRA and WHO call on the pharmaceutical industry to commit, within short timelines, and without waiting for legal changes, to provide voluntary unrestricted access to trial results data for the benefit of public health.”

Completeness of open access FluNet influenza surveillance data for Pan-America in 2005–2019 | Scientific Reports

Posted on January 22, 2021 by peter.suber's bookmarks

Abstract: For several decades, the World Health Organization has collected, maintained, and distributed invaluable country-specific disease surveillance data that allow experts to develop new analytical tools for disease tracking and forecasting. To capture the extent of available data within these sources, we proposed a completeness metric based on the effective time series length. Using FluNet records for 29 Pan-American countries from 2005 to 2019, we explored whether completeness was associated with health expenditure indicators adjusting for surveillance system heterogeneity. We observed steady improvements in completeness by 4.2–6.3% annually, especially after the A(H1N1)-2009 pandemic, when 24 countries reached?>?95% completeness. Doubling in decadal health expenditure per capita was associated with?~?7% increase in overall completeness. The proposed metric could navigate experts in assessing open access data quality and quantity for conducting credible statistical analyses, estimating disease trends, and developing outbreak forecasting systems.

Vigilance for Medical Products of Human Origin—Progress on t… : Transplantation