NGO Perspective On Open Trial Access: What You Measure, Gets Done
The NGO advocacy community is another force in moving the needle on open access to trial data. Bioethics International is currently the leading player.
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Transparency is an issue that continues to pose reputational challenges for biopharma. A key flashpoint is the disclosure – under open access rules – of clinical trial data in a climate of mounting therapeutic competition. Still, some industry players are pushing the boundaries around open access. Project Data Sphere, a non-profit group backed by the CEO Roundtable on Cancer, is taking advantage of new IT platforms and the rich target potential in discovery science to press for a larger industry consensus around new ways to release high-value data embedded in years of trials, all for the benefit of cancer patients.
As the global access debate adapts to the stark inequities exposed by the COVID-19 pandemic, the UN-backed Medicines Patent Pool is emerging as a key player on issues ranging from vaccine tech transfer to making more drugs affordable against the spread of non-communicable diseases like cancer to middle- and low-income countries.
Powered by prominent global health philanthropies and the UK’s world-class collaborative capabilities in disease surveillance, the new International COVID-19 Data Alliance (ICODA) is gearing up to address a crucial – and yet unanswered – policy question for public health: can sharing data curated from a diversity of sources provide the hard evidence needed to improve patient outcomes against the virus – not just for today’s pandemic, but for future ones as well? Much will depend on a robust response from big pharma.