Health Care Data Is a Researcher’s Gold Mine

Article by James O’Shaughnessy: “The UK’s National Health Service should aim to become the world’s leading platform for health research and development. We’ve seen some great examples of the potential we have for world-class research during the pandemic, with examples like the RECOVERY trial and the Covid vaccine platform, and since then through the partnerships with Moderna, Grail, and BioNTech. However, these examples of partnership with industry are often ad hoc arrangements. In general, funding and prestige are concentrated on research labs and early-phase trials, but when it comes to helping health care companies through the commercialization stages of their products, both public and private sector funding is much harder to access. This makes it hard for startups partnering with the NHS to scale their products and sell them on the domestic and international markets.

Instead, we need a systematic approach to leverage our strengths, such as the scale of the NHS, the diversity of our population, and the deep patient phenotyping that our data assets enable. That will give us the opportunity to generate vast amounts of real-world data about health care drugs and technologies—like pricing, performance, and safety—that can prepare companies to scale their innovations and go to market.

To achieve that, there are obstacles to overcome. For instance, setting up research projects is incredibly time-consuming. We have very bureaucratic processes that make the UK one of the slowest places in Europe to set up research studies.

Patients need more access to research. However, there’s really poor information at the moment about where clinical trials are taking place in the country and what kind of patients they are recruiting. We need a clinical website to give that sort of information.

There’s a significant problem when it comes to the question of patient consent to participate in a R&D. Legally, unless patients have said explicitly that they want to be approached for a research project or a clinical trial, they can’t be contacted for that purpose. The catch-22 is that, of course, most patients are not aware of this, and you can’t legally contact them to inform them. We need to allow ethically approved researchers to proactively approach people to take part in studies which might be of benefit to them…(More)”.