Can Medicine Be Cured

by Seamus O'Mahony

  Digital health is big business: the global market for wearable self-tracking technologies was worth $3.2 billion in 2014, with an expectation to grow to $18.8 billion in 2019. American corporations see these tracking devices as a means of reducing their spending on health insurance for their employees. The retail company Target offered 335,000 Fitbit fitness-tracker devices to its US workers; the oil company BP had a similar offer. The Affordable Care Act allows companies to reduce the cost of health insurance premiums by up to 30 per cent when workers participate in such ‘corporate wellness plans’. Eric Topol doesn’t see any downside to corporations monitoring their employees: ‘There are data suggesting that when good behaviour, such as exercise, is fun and “gamified”, it’s particularly well received and motivating… British Petroleum and Autodesk are large companies that have incorporated wearable sensors for their employee base, initially tracking exercise and sleep.’ It is highly likely that in the near future – particularly in the US – employees of major corporations will be required to wear digital devices which track their health and their behaviour. This is already happening on a voluntary basis, with a variety of incentives, but will soon become compulsory. Those who refuse to co-operate with this surveillance will become the new uninsured health underclass.

  Another strand of digital health is online patient communities such as PatientsLikeMe. This online community was launched in 2006 by Jamie and Ben Heywood after their brother Stephen was diagnosed with motor neurone disease. Eric Topol is a great supporter: ‘The pervasive progression towards openness is fuelling a remarkable degree of activism across consumers, patient groups, research foundations, and the life science industry.’ When I looked up the website of PatientsLikeMe, I found that this ‘community’ seemed very much like any other for-profit tech company, with pictures of smiling vice presidents for ‘Innovation’ and ‘Computational Biology’. The website states: ‘Our goal is to make as much data as possible openly accessible to researchers, and to you.’ PatientsLikeMe encourages members to ‘donate’ their health data, and to resist ‘the culture of distrust towards pharmaceutical companies’. The company freely admits that it sells health data gathered from its members to pharmaceutical companies. In 2010, PatientsLikeMe was the target of data ‘scraping’ by the informatics and media company Nielsen; PatientsLikeMe chairman Jamie Heywood told the Wall Street Journal: ‘We’re a business, and the reality is that someone came in and stole from us.’ A digital pharma stealth economy has emerged with companies like PatientsLikeMe who monetize the sick while promising to ‘empower’ them. There are now numerous ‘disease awareness communities’, many on Facebook and YouTube; members of these ‘unbranded’ communities may not be aware that the ‘moderators’ are paid by pharmaceutical corporations.

  Genomics is the great hope of digital health. For more than a decade now, companies such as 23andMe have offered direct-to-consumer genetic testing, the cost of which has fallen steadily. The service was initially gimmicky, telling customers why they had dry earwax or smelled asparagus in their urine, but over the years became more serious, advising users on their risk of diabetes, dementia and various cancers. 23andMe engaged in a long dispute with the US Food and Drug Administration (FDA). The FDA clearly had serious concerns about 23andMe’s methods, and in 2013 ordered the company to stop marketing its saliva-collection kits and Personal Genome Service. After prolonged negotiations, the FDA finally granted approval. Many of 23andMe’s customers are so frightened by their test results (for example, a 60 per cent risk of developing Alzheimer’s disease with two copies of the ApoE4 variant gene) that genetic counsellors cannot keep pace with the demand for their services.

  Anne Wojcicki, CEO of 23andMe, has stated that her ambition is to build a database with the DNA data from 25 million customers: ‘An incredibly valuable tool for all research – for academics, for pharma companies.’ The science writer Charles Seife has written that 23andMe’s long-term ambition is the same as Google and Facebook:

  The Personal Genome Service isn’t primarily intended to be a medical device. It is a mechanism meant to be a front end for a massive information-gathering operation against an unwitting public… For 23andMe’s Personal Genome Service is much more than a medical device; it is a one-way portal into a world where corporations have access to the innermost contents of your cells and where insurers and pharmaceutical firms and marketers might know more about your body than you know yourself. And as 23andMe warns on its website, ‘genetic information that you share with others could be used against your interests. You should be careful about sharing your Genetic Information with others.’

  Facebook and Google also started out with similar rhetoric about ‘empowering’ consumers and creating ‘communities’. Anne Wojcicki was once married to Google’s Sergey Brin. At a TED meeting in 2014, Brin’s business partner and Google co-founder Larry Page said: ‘Wouldn’t it be amazing to have anonymous medical records available to all research doctors? Making our medical records open for sharing would save 100,000 lives a year.’ (Quite how Page arrived at this figure is not clear.) Eric Topol approvingly quotes a medical software expert, Melissa McCormack, who suggests that ‘we’d all be better off with our health records on Facebook’. It is not difficult to predict where the digital health movement is heading. Companies such as 23andMe will harvest huge numbers of individual genomes. This information will be purchased, directly or indirectly, by pharma, health insurance companies and other agencies, including life insurance companies, potential employers and government agencies. Harvard University’s Personal Genome Project (PGP) requires volunteers to consent to sharing of their data: ‘The PGP’, writes Eric Topol, ‘has leveraged online forums, LinkedIn and Facebook, along with annual meetings, to provide a highly interactive experience and education for the participants who are largely without a background in science.’ The Global Alliance for Genomics and Health (GA4GH) held its first meeting in 2014, where 150 organizations were represented, including Google.

  The Orwellian dystopia is well under way: a US start-up called Miinome pays poor people cash for their genome. An American company called Exact Data sells lists of people with sexually transmitted diseases. The Carolinas Health System mines consumer credit card data to identify high-risk patients, through their purchases of alcohol, tobacco and other unhealthy items. In 2013, the UK government launched a major campaign called Care.data: the medical history of all NHS patients was digitized and stored in a central repository at the Health and Social Care Information Centre (HSCIC). In February 2014, data on 47 million patients was sold to an insurance company. The trade in medical data is big business. Data brokers such as the US firm IMS Health collect data from pharmacies and insurance companies; it sells information to pharma on the prescribing habits of individual doctors to help these companies refine their marketing. Pfizer spends $12 million every year on health data from companies like IMS. Other buyers include advertising companies and institutional investors in pharma. Medical data are never ‘private’: data-mining tools used by companies like IMS can easily crack supposedly anonymous databases by cross-referencing data from other sources. IMS say they have no commercial incentive to identify specific individuals, but other data brokers will surely figure out how individuals’ data can be monetized. The digital health techno-utopians view privacy as quaint, old-fashioned and redundant, an obstacle to ‘sharing’ data with industrial ‘partners’. Some have gone further, arguing that privacy as a notion is now opposed to the collective good and is therefore not only out-dated, but positively antisocial. Facebook and Google make money by monetizing their users, by extracting and selling their data. At present, these tech giants mine the Little Data, but what they are really interested in is the Big Data, and what could be bigger than the genome, and all the other ‘omes’ that make up a human being?

  Online medical consultation services are now well established, and appeal mainly to the young. Many have expressed concern about the absence of regulation, lack of continuity an
d inappropriate prescribing; traditional doctors baulk at the idea of treating patients without carrying out a physical examination. But the physical examination has lost its importance; doctors now spend more time staring at screens than they do looking at patients. US medical students and trainees have become so detached from the basics of medicine that the physician and novelist Abraham Verghese (who works at Stanford Medical School) has rebranded the physical examination as the ‘Stanford 25’: ‘twenty-five technique-dependent, physical diagnosis manoeuvres’. Although I am suspicious of the phrase ‘Stanford 25’ – implying, as it does, that Stanford Medical School somehow invented the physical examination – Verghese has correctly argued that the ritual and physical contact of the physical examination are a vital component of that unquantifiable thing called ‘healing’. Many within American medicine lament the obsession with digital data at the expense of old-fashioned doctoring. John Mandrola, a cardiologist, wrote:

  As the healthcare machine increasingly embraces mobile sensors, digital records, and binary quality metrics, what used to be the care of people has tragically become the treatment of aberrations of 1s and 0s.

  … Good doctoring is not rocket science. But it is also not digital. It is not a white screen. It is not numbers from a pulmonary artery. And it does not come quickly. It requires seeing patients alongside mentors over years. What worries me is that we are taking our eyes and ears off people. We are distracted, perhaps intoxicated, by the 1s and 0s.

  Eric Topol views doctors like me as the chief professional obstacle to digital health: ‘Half of American physicians are over age fifty-five, far removed from digital native status (under age 30).’ Topol (sixty-four), with his 2.8 million Instagram followers, is the disco-dancing dad of digital health. The self-styled ‘medical futurist’, the Hungarian Bertalan Meskó, is Topol’s ideal digital native doctor: ‘Since the age of fourteen, I have been logging details of my life every single day. It means not one day is missing from my digital diary which now consists of over 6,600 days with data.’ Like Topol, he argues that ‘the ivory tower of medicine is no more’, and that ‘patients, now called e-patients or empowered patients, who are ready to hack and disrupt healthcare need guidance.’

  There have been several recent examples of digital snake oil, the most conspicuous being Theranos, a health technology firm founded in 2003 by a nineteen-year-old Stanford dropout called Elizabeth Holmes. Her idea was to sell cheap blood tests by the attractive gimmick of taking a tiny drop of blood, run it through the nanotechnology called ‘lab on a chip’ and return hundreds of results in minutes. She described this as ‘the iPod of health care’. Holmes, good-looking and charismatic, was a brilliant saleswoman and persuaded very rich people such as Rupert Murdoch to invest in Theranos, which at its peak was valued at $10 billion. Two former US secretaries of state – George Shultz and Henry Kissinger – were persuaded to join the board of directors. Holmes negotiated a contract with the pharmacy giant Walgreen, and all 8,200 drugstores in the chain had a ‘Theranos corner’. John Carreyrou, a Pulitzer Prize-winning investigative journalist with the Wall Street Journal, was alerted by a whistle-blower that all was not what it seemed at Theranos. He found that the technology wasn’t accurate and had never undergone independent testing. Holmes and Theranos responded with a campaign of legal intimidation described as ‘vicious’, but Carreyrou and the Wall Street Journal stood up to this charismatic bully. Theranos’s share price collapsed, and they were sued by Walgreen. In June 2018, Holmes and her business partner Sunny Balwani were indicted on multiple counts of fraud. Eric Topol was entranced by Holmes: ‘She gets it – she’s a digital native’; he lauded her rhetoric about a patient’s access to their blood tests being ‘a basic human right’. When Holmes was found out, Topol wrote a self-serving new epilogue to his book The Patient Will See You Now, in which he stated: ‘I remained concerned about the total lack of transparency of the company’s technology.’

  Digital health originated in part from the Quantified Self movement, whose motto is ‘self-knowledge through numbers’. This movement was founded in 2007 by Kevin Kelly and Gary Wolf of Wired magazine. The Quantified Self – and digital health – are symptoms of the contemporary obsession with control. Data and metrics are regarded as clean and predictable, far removed from the contingencies of real life and the messiness and uncertainty of the body and its ailments. Although it was first coined by the American author David Brooks, the Israeli historian Yuval Noah Harari has popularized the word ‘Dataism’ to describe this modern pseudo-religion:

  Like every religion, it has its practical commandments. First and foremost, a Dataist ought to maximise data flow by connecting to more and more media, and producing and consuming more and more information. Like other successful religions, Dataism is also missionary. Its second commandment is to connect everything to the system, including heretics who don’t want to be connected.

  Digital health also reflects a global societal shift towards neo-liberal values of self-responsibility for health maintenance, along with a decline in state-provided health and social care. Americans have enthusiastically embraced digital health because they believe it will reduce their ever-rising, and out of control, spending on health. The overwhelming likelihood is that it will do the exact opposite: historically, new technology has always driven up the cost of health care. So far, the chief beneficiaries have been the medical–industrial complex and the technology corporations.

  Digital health is the logical conclusion of Ivan Illich’s ‘social iatrogenesis’ – the wider cultural harm (as distinct to harm inflicted on individuals) caused by medicine’s hegemony – and Petr Skrabanek’s ‘coercive healthism’. Both would have been grimly satisfied that they have been proved right: digital health will create a surveillance society, or ‘data dictatorships’, as Yuval Noah Harari predicts. In his book The Death of Humane Medicine, published shortly before his death in 1994, Skrabanek warned:

  In the iatrocratic state (to use Thomas Szasz’s term), power is vested in the priests of the body and the priests of the mind. ‘Health’ is the supreme virtue and must be maintained at all costs. Every person, without realizing it, writes his or her own dossier, where every deviation from the norm is recorded at regular screenings. Notes are taken on lifestyle, risk factors and genetic profile. The doctor, the employer, the insurance company and the police hold (or soon will hold) in their interlinked computers all the information required, according to which the person will be judged when applying for a job, seeking medical care, applying for medical insurance, intending to travel abroad or wishing to procreate. With healthism as a state ideology, the blueprint for the iatrocratic state exists. It is being implemented by degrees. This book is intended as a warning.

  Neither Illich nor Skrabanek anticipated, however, that coercion would not be needed: the new ‘e-patients’ have willingly and happily handed themselves over. Skrabanek died before the Internet really got going, and well before the arrival of the tech giants. Healthism now is not predominantly coercive, imposed by the state with an agenda of social engineering, but a broad societal consensus that more medicine, more health care, is good. The tech corporations and the medical–industrial complex will round up vast populations who will not resist, who are happy to be herded because they are assured that they are empowered members of a digital, and digitized, community.

  11

  The Anti-Harlots

  Consumerist movements like digital health have the explicit aim of reducing the power of doctors and rebalancing the doctor–patient relationship in the patient’s favour. The power of doctors, however, has been in steady decline for decades. After the Bristol and Shipman scandals, British doctors were subjected to a degree of scrutiny and regulation endured by no other professional group. This new regulation was initially ordered by politicians such as Alan Milburn and judges such as Dame Janet Smith; the General Medical Council and the Royal Colleges all eagerly co-operated. I left the NHS just in time – in 2001 – but Ireland is fo
llowing close behind, as it always does.

  When I qualified in 1983, I caught the end of the golden era of the medical profession and of medical innovation. The decades since then have witnessed numerous NHS scandals. In the ten years from 1998 to 2008 alone there were four: Bristol, Alder Hey, Shipman and Stafford. The Bristol Royal Infirmary Inquiry was set up in 1998 under the chairmanship of Ian Kennedy QC to investigate the deaths of children who had undergone cardiac surgery there. The inquiry’s report was published in 2001 and was severely critical of the surgeons’ performance and professional culture. The Kennedy report recommended the introduction of regular appraisal and revalidation for doctors. One of the senior surgeons, James Wisheart, and the chief executive, Dr John Roylance, were struck off by the General Medical Council. One of the witnesses to the Bristol inquiry drew attention to the large number of children’s hearts stored in the pathology department at Alder Hey Hospital in Liverpool. This led to another report, published in 2001, which caused a national outcry and eventually led to the Human Tissue Act in 2004. In 2000, the Manchester-based GP Harold Shipman was found guilty of murdering fifteen patients. An inquiry was set up in 2001 under the chairmanship of Dame Janet Smith, and reported in 2005. The report recommended much tighter regulation of doctors. The greatest NHS scandal, however, concerned the care of patients and mortality rates at Stafford Hospital. The story broke in 2007 and led to two public inquiries chaired by Robert Francis QC, a barrister specializing in medical law.