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most importantly, to tap into the cost-saving benefits or revenue- surrounding the rights of access and use of aggregated data can be generating capacity that this knowledge will bring. established for the citizen and the common good, then the likely The capacity to enter information into a database in real time has default position will be a few powerful multinationals controlling far-reaching implications for all involved. The sharing of data the knowledge in collaboration with governments. across multiple parties, including general practitioners, specialists, In order to put the endpoint of this power game into context, it's clinics, hospitals and support services (pathology, radiology), not necessary to recognise not only the US$3 trillion industry that's up only provides the clinician with all the information relating to the for grabs but also the value of this new knowledge-based medical events of the patient, but means that the benefits and risks commercial asset. Although no reliable figures for this of any new drug, product or procedure can be realised in a knowledge asset have been published to date, it's easy to estimate comparatively short time This will release those that pay and those — what the asset value and thus the share value would be if a small that prescribe from the bondage of the pharmcos and manufacturers group of multinationals controlled the very heart of this of new technology and enable more cost-effective treatments that knowledge-based revolution. achieve better outcomes for patients. The UK government's This asset would contain the medical records (including DNA expected cost of running the NHS's new IT systems could cost £40 profiles) of the majority of individuals within the Western world billion by 2014, a huge increase on the budgeted cost in 2002 of and, in particular, information on those individuals who have the £6.2 billion.’ Where are the tangible benefits for patients? ability to pay for extended treatment and can access the To date, most of these repository projects have run into appropriate insurance. problems due to the resistance of clinicians, who traditionally The real asset value increases dramatically as it becomes collect and effectively "own" patient information, to enter this possible, then, to match these findings with emerging genomic data and share it with the owners of the new repository systems products. This provides the owners of this information with the or, in many cases, even with the patients themselves. However, ability to offer personalised treatment for the existing chronically ill governments are not hindered in the funding of these systems population of the Western world as well as for the targeted market because without access to this type of knowledge they have referred to as the "worried well" that would effectively become nothing with which to combat the spiralling healthcare costs. drug-dependent for the rest of their lives in the belief that they were The insurance industry is also taking a keen interest in taking preventive medicine. accessing the knowledge from these harvested repositories. In the USA, POWER BLOC DYNAMICS the health insurer Kaiser Permanente, . To gain an understanding of these which has 8.7 million members, The emerging fourth force forces and to work out the employs over 13,700 physicians and A iwi implications of what happens if any runs more than 30 medical centres,’ comprises the communities of particular party wins the high ground, has already established its own common interest whose concern we need to analyse the politics of repository and through the harvesting A A ower. Only then do the tactics and of data can now offer treatment to is to obtain knowledge of what strategies of the dirty war become members whose data indicate that actual ly Clinically works for them apparent and the darker implications they may be heading towards an . . ses sae for us all become blatantly obvious. adverse event, such asa heart attack, in their specific condition. The three blocs currently vying for so producing large savings for the power are those that control the organisation. manufacturing and dispensing of drug- With the pharmaceutical corpora- related products, those that are tions taking a keen interest in acquiring the knowledge harvested authorised to diagnose and prescribe product-based treatments, and from these massive data repositories, the battle for control is also those that pay—which, in most Western countries, tends to be touching on a range of issues regarding ownership of individual governments and/or insurance companies rather than consumers. and collective data. The emerging fourth force comprises the communities of common Each country seems to be tackling the issue of identity interest whose concern is to obtain knowledge of what actually verification along similar lines, using national ID cards and welfare clinically works for them in their specific condition. As these eco- or tax numbers, or arguing for a national ID card or exchanges that groups aggregate, they will gain the consumer power to counter the can link together multiple existing ID systems for health and pharmaceutical industries, accrue the knowledge to challenge the welfare. Much confusion exists around ownership and privacy, diagnostic powers of healthcare providers and exert political power where most governments and corporations seem to use privacy to dictate policy change or even to remove governments. legislation as a reasonnot to provide information to citizens. Most commentators are aware of the general dynamics between In order to avoid this tricky issue of ownership, a common the three power blocs, but few have factored in the destabilising approach is to allow personal information within a health record fourth power. Aside from any obvious outcomes of a power shift, (including the DNA profile) to be sold without permission, as such as a rise in prescription costs and insurance or a tightening of long as the person's name is not included. This "de-identified" restrictions on the products we buy or the services we are granted rationale falls down on two points: first, it is possible to access to, very little is said about the true ramifications for us, and reconstruct identities from these databases using new probability even less thought is given to the emerging, not-so-passive, fourth software; and second, current practices allow de-identified power. Let's examine the potential for each group. information to be sold by a third party, without the owner's permission, to multinational insurance companies, which in effect Manufacturers and dispensers challenges the whole principle of ownership and legalises theft by The stated goal of these manufacturing/dispensing players is corporate bodies. absolute control of product supply and, if possible, the extended use Unless ownership of individual data and the range of issues of drug products for all, including the chronically ill (33 per cent of The emerging fourth force comprises the communities of is to obtain knowledge of what actually clinically works for them in their specific condition. Manufacturers and dispensers The stated goal of these manufacturing/dispensing players is absolute control of product supply and, if possible, the extended use of drug products for all, including the chronically ill (33 per cent of 22 = NEXUS common interest whose concern www.nexusmagazine.com DECEMBER 2007 — JANUARY 2008