The NHS. It's made of...people

14 July 2009

The Office of Life Sciences Blueprint for the UK's National Health Service (NHS) is a remarkable document. It's found a way to turn the nation's single largest consumer of public funds into a profit centre. Although the blandly worded manifesto for a technologically led healthcare system will probably remain mostly unimplemented amid the upheaval of a likely change in ruling party come 2010, it still carries a slightly chilling undercurrent.

Take this nugget for example (with my emphasis):

"1.5 The NHS is a unique selling point for the UK, and has the potential to add significantly to the UK's attractiveness as a base for life sciences, providing high-quality healthcare to all, and offering a competitive advantage with its vast patient databases for clinical trials and investigations. There is also a vital role for the NHS as a value-creator and an engine of economic growth, leading the way in the uptake of innovative medicines and technologies, deepening collaboration with industry, and helping the industry to flourish and grow. In turn, a flourishing life sciences industry will help generate the step-change innovation needed to maintain quality and productivity into the future."

In other words: "Invest here. We've got lots of sick people with all their records sitting in a shiny new database (well eventually they will be)."

By no means am I against using technology to combat disease. It's way more useful than the various forms of woo that the NHS has been encouraged to embrace in recent years. But making the NHS an extension of the Department for Business Innovation & Skills (BIS) -the name for the former DTI this week - could have repercussions not just for healthcare but the position of science and technology in the popular mind.

One of the ironies of our time - or maybe it is a logical outcome - is that, as our society becomes more dependent on technology, more people rail against it, choosing to embrace superstition and pseudoscience instead. I have no doubt that poor reporting of science contributed heavily to the MMR debacle and the resulting rise of measles cases among children. But many of the reporters working on the anti-MMR stories genuinely took the view that the government was holding something back. I remember a conference four years ago where journalists, clearly from that camp, gave freelance journalist Brian Deer a hostile reception as he talked about his reporting on the antics of anti-MMR campaigner Andrew Wakefield.

There is a strong undercurrent of public opinion, partly driven by BSE experience on one side and the campaign against genetically modified (GM) food on the other, that the government is not really on our side when it comes to health.

The idea that government has its own agenda for technology has proved problematic for those working on nanotechnology and could upset the progress of synthetic biology in Europe. The lessons from the GM debate helped drive a different approach using, in the words of BIS civil servant Adrian Smith at a recent OECD-sponsored conference on synthetic biology "arm's length agencies to start the dialogues and drive the conversations". He acknowledged: "It can often be in the UK that an initiative launched by government is already suspicious."

However, parts of the blueprint from the Office of Life Sciences, which is jointly staffed by officials from BIS and the Department of Health are like tossing a grenade into these debates.

The sweetener for the blueprint is £25m for a trial to start next year of a way of fast-tracking the kinds of drugs that are good at making headlines because of the current need for everything to pass through a cost/benefit appraisal by the National Institute of Clinical Excellence (NICE). The fast-track scheme will make it possible for the NHS to get a few good-news stories through on how some people have been able to get hold of possible miracle drugs.

There is little doubt that, without major changes, the pharmaceutical industry in the US and, in second place, the UK is staring disaster in the face. I've heard senior scientists talk to their colleagues at conferences about how much trouble their employers are in: that their drug pipelines are effectively broken. Too many drugs fail halfway through trials because they don't work well enough across a broad spectrum of the population, or threaten to kill a significant minority through side effects.

There are possible ways out of this. One is to use the research from fields such as systems biology to screen out the duds earlier in the pipeline and to identify promising combinations of existing drugs. Another is to adopt personalised medicine, although some of the people I've spoken to about this within pharmaceutical companies are sceptical of the real value of this approach.

Changing the way that a major healthcare provider such as the NHS operates can have a dramatic effect on how the medical-technology suppliers can bring treatments forward. The blueprint sets out a way in which the NHS can adjust its methods to make the process easier.

But the blueprint goes further, in effect putting the UK population up as a resource for research and development. I can see the rationale behind this. But research into bioethics has demonstrated numerous times that populations dislike their personal data and attributes used as bargaining chips by governments with business. It does not make them feel that government has their best interest at heart (although there is something to be said for trying to maintain some form of manufacturing industry in the UK so that we can continue to fund the healthcare system).

The story of DeCode Genetics in Iceland should provide some clues as to what can happen. Opposition quickly grew to the government's plans for a national database in the late 1990s and the Icelandic Supreme Court killed off the project in late 2003. DeCode has never turned a profit.

If the UK government wanted a lightning rod for continuing and even encouraging opposition to biotechnology, it may well have written the blueprint for it.

1 Comment

Using the British tax payer as a test tube to try out new drugs is one way of keeping the British pharmaceutical industry going and making the NHS pay for itself.

The pharmaceutical industry is almost the only export manufacturer we have left.

Under Statutory Instrument No. 38 (2009)
Public Health, England only - in force from 1 April 2009 (England only)
The Health Protection (Vaccination) Regulations 2009.

If the Secretary of State asks the Joint Committee on Vaccination and Immunisation (JCVI) for advice about new schemes to vaccinate all individuals in England who meet specified criteria, he is obliged to make law what JCVI recommends. The recommendations will also be based on cost-effectiveness.

The JCVI are unelected volunteers and some do paid consultancy work for the vaccination industry or receive funding or grants from the vaccination industry.

I wrote to my MP about this as it seems to open the door to compulsory vaccination based on industry recommendation.

The Secretary of State believes this Act is not a human rights issue.

If UK plc is the business and the public are the customers, who exactly are the shareholders? Nobody is at the helm.