Upgrading Medicine
Chris Dancy does not joke around when it comes to personal health. He is known as “the most connected man on Earth.” With 700+ sensors, devices, and applications he rigorously tracks every aspect of his life from the more ordinary sleep, eating, and exercise to the more surprising brain activity and self-esteem. In his book, “Don’t Unplug: How Technology Saved My Life and Can Save Yours too,” he explains why and how technology can help individuals become healthier, happier, and more successful. Dancy is part of a social movement of people (mostly tech-executives in Silicon Valley) that engage in the practice of biohacking. Biohacking encompasses any activity that allows a human to optimize his or herself including tracking, implanting devices in the body, and cybernetics. The biohacking community strongly supports the use of technology (especially emerging technology) to achieve trans-humanism, the next, enhanced, generation of humanity. Although all this might seem like it belongs in a science-fiction movie instead of in the hands of the executives of the tech companies who are influencing our everyday lives, medical professionals and people in the biotech industry have much to learn from this movement which sheds light on the desires of patients and potential applications for emerging health technologies.
Dancy claims his obsessive tracking was sparked by his medical providers’ inability to understand his history and condition. Doctors and health scholars around the world recognize the existence of information gaps: between the patient and his condition; consequently, between the doctor and the patient’s condition; and finally, between the doctor and the patient. It seems like the “How much does it hurt from one to ten?” is just not cutting it anymore. Going forward, people speak of “the four P’s of the future of medicine” being prevention, prediction, personalization, and participation. This paper will support the literature that predicts “P4 Medicine” while also shedding light on a ubiquitous but often overlooked trend of individuals who leverage technology to self-manage their health. The first two sections of the paper will explore the technologies that are contributing to creating this future in medicine and the last section will discuss societal implications of implementing these technologies.
“The Patient is at the of the Experience”
The first section of this paper will establish the need for empowering individuals, through technology, to take a more active role in the maintenance of their well-being. It will also illustrate the ways in which health technologies are giving way to medicine that is more personalized and participatory.
“When was the last time you felt pain?” “How long ago did you start feeling this way?” “Has it changed in any way?” These are typical questions doctors ask their patients when formulating a diagnosis. Unfortunately, the answer is typically vague, or patients do not remember at all. This is understandable given that there are studies which prove that the functionality of the hippocampus, a part of the brain associated with memory, is inhibited when people are tired or sick. In these cases, people usually rely on their creativity to think about the past and thus, create false memories, which makes matters even worse. This is frustrating for doctors given that they cannot give a helpful diagnosis if they do not have accurate information on your symptoms. People might downplay the importance of perfectly accurate memory in this setting, and for the common cold, they may be right, but for chronic conditions, especially those that impair memory, this can have very negative repercussions.
Consider the work of Dr. Brian Litt who implanted devices on the brains of his patients who have epilepsy. After a while of measuring the patients’ brain activity, the devices were able to record more seizures than the patients actually reported. Not only that, but the devices also recorded data on the duration and intensity of the seizures. Dr. Litt explained this information was very helpful in determining courses for treatment, types of medications, and helping the patient understand what triggers his or her seizures. On top of that, Dr. Litt said that when aggregated, this data could provide valuable insights for the study of epilepsy and other conditions that disturb brain activity. During break I asked Dr. Litt if this could help patients manage their seizures better. He responded that normally the data is reserved for doctors’ and researchers’ eyes only and their findings are then transmitted to the patients, who take the appropriate actions based on the data findings. But what if, like Chris Dancy, the biohacker, patients had access to the recording of their brain activity? They would not have to wait to go to the doctor to figure out that at certain times throughout the night or at certain temperatures, for example, they are more propense to get a seizure. Of course, they would still share this data with their doctor, but it would decrease the number of visits to the doctor’s office and patients could take more immediate action.
One of the most inhibiting aspects of epilepsy is its unpredictability. According to IEEE Pulse, a magazine focused on Medicine and Biology, “If seizures could be predicted, people with epilepsy would have the opportunity to lead more normal lives. Patients could avoid potentially dangerous activities like driving, administer medications only when needed, or alert caregivers before a seizure starts. Essentially, patients would get back a degree of control in their lives.” Sure enough, Mike McKenna, one of the individuals they interviewed for the article said that “being able to see my own seizure data helped remove that mystery and some of the worry about seizures for me.” I asked my uncle who has epilepsy to what extent seeing his own brain activity, as opposed to only doctors having access to it, would help him deal with seizures. He answered that it would be immensely helpful because he is, of course, not always surrounded by people who know of his condition and thus could prepare/alert them if the device in his brain starts recording unusual brain activity. This communication could not happen as fast or smoothly (maybe not even at all) if the doctor alerts the patient and then the patient alerts someone next to him or her, given that the patient would be seeing the data in real time and could act immediately. With advances in technology and rising patient participation, epilepsy will one day become as patient-managed as diabetes is today. Diabetes patients have the agency to measure their glucose levels and inject insulin accordingly. Similarly, people with epilepsy will know in real-time when they are about to have a seizure and use the device implanted in their brains to trigger brain stimulation, thereby preventing or minimizing the intensity of the seizure.
Researchers at Microsoft are working on technologies to digitally memorize your life and they believe medical care will greatly benefit from this. They are developing systems that can “automatically record communications, documents, images and video, storing everything in a searchable archive.” As the technology in sensors and data storage progresses, one can imagine that the ease of implementation of their work into the medical sphere will only become easier and faster. Nanotechnology will play a big role in the digitalization and storage of the self by allowing large data banks, such as all the information from a person’s life, to be contained in one portable chip. The challenge then will be designing ways of organizing all that information and presenting it in a digestible way. Soon enough, patients will be able to explore relevant health information in their “digital memory” archive and share it with their doctors instead of relying on their sometimes biased, and many times faulty, memories. This will allow doctors to work with more accurate information, take into account many different contextual factors, and look at patient-specific information. The result will be a personalized diagnosis that does not rely on one-size fits all solutions.
As people get more access to their personal healthcare data and to ways of treating themselves, Rebecca Lemov, a sociologist at Harvard, believes that the personalized and participatory future of medicine will become “first, self-oriented (treating the self as object of research) and, second, self-driven (the self as subject initiating collection activities).” Instead of a scientist or a medical professional studying subjects, subjects will study themselves by consistently tracking their day-to-day activities with wearables and sensors. All their devices will be connected through a network in the cloud (the Internet of Things), such that every device will have the capability to know every aspect of your life. Given that an individual’s health is so inter-connected (their eating to their sleep, their sleep to their exercise, and so on), health technology must be comprehensive enough and have all the data available to understand the different variables that are at interplay. As these devices and sensors share the data they have tracked with the users, they give users the capability to experiment with their behavior and optimize different areas of their life such as time and activities. Moving forward, innovation in health trackers and sensors will allow them to not only share data with users but also make intelligent recommendations based on that data (using artificial intelligence).
The healthcare technology companies that will gain the most market share, however, will be the ones that go one step beyond making recommendations by incorporating gamification and personalized network effects as well as explainable Artificial Intelligence practices that help users understand why the course of action the algorithm is recommending makes sense. In a recent digital health conference, Fitbit CEO, expressed concern about having high sale figures but a low percentage of consumers who routinely use their device. Wearable devices are already personalized but they still have trouble catching up to the larger trend of users who are taking a more active role in their health. Gamification has been a popular approach to increasing user engagement especially when combined with a network of friends who motivate each other and create competition. On the topic of incorporating explainable Artificial Intelligence, the CEO of a wearables company called Valencell says, “Old school products show a number, but the next generation will not simply tell you how you are doing: You have improved 10 per cent. They will give you personalized direction and meaning. You need a coach, feedback, a sense of accountability.” Health devices such as wearables will take the role of personal trainers, helping users achieve their goals. As more healthcare providers and health technology companies start realizing that individuals want more agency in the process, they will revise their product and service line to serve as facilitators of self-care. All this will significantly contribute to the personalized and participatory aspects of the future of medicine.
Preventing What Has Been Predicted
This section will discuss how health technologies are streamlining the predictive and preventive characteristics of futuristic medicine. Some topics build on things that were discussed in the previous section because many health technologies combine all the four P’s of prediction, prevention, personalization, and participation.
In her Netflix stand-up comedy special, Ellen DeGeneres makes fun of drug and pharmaceutical companies’ marketing strategies as they are bringing out the hypochondriac in all of us. Their commercials typically showcase a variety of ordinary people doing ordinary activities such as playing with their dog, eating ice cream, and walking in the park. Given that these activities are so popular, anyone can relate to these people, and thus, everyone could potentially make use of the product. Specifically, Ellen ridicules medicines that prevent migraines and stomach aches because their target market is so broad it includes anyone who is at risk of having pain. Although Ellen brings attention to the comedic aspect of this, medicines and procedures that claim to be predictive and preventative are becoming more and more popular.
Oscar Health is a “A New Kind of Insurance Company” that aims to disrupt the insurance industry by using big data and predictive analytics. Using machine learning, the companies’ algorithms are able to design personalized pathways to connect patients with the doctors and treatments that are best-suited for them. Oscar claims its edge over other insurance companies is that using aggregated data, it can predict the spread of certain viruses and bacterial infections. Thus, its members are ready for the next wave of the flu, for example, and can take the appropriate measures to boost their immune system before it hits. However, there has been significant backlash towards technology companies who claim their predictive analytics can accurately determine the prevalence of future infections.
Google Flu Trends was immensely scrutinized when it predicted more than double the number of doctor-visits relating to influenza symptoms than the Centers for Disease Control (CDC) actually reported. Google Flu Trends has since shut down, but health scholars believe there is much to learn from their use of big data analytics in predictive medicine. The perils of predictive analytics abound, especially in the healthcare sphere. In the case of Google Flu trends, the algorithm overestimated influenza activity in the United States because it could not differentiate between influenza and common cold symptoms, according to Science magazine. There is also the danger of people who would benefit from increased sales of certain preventive drugs or treatments feeding the algorithm erroneous data to alarm people and get them to buy their drug or treatment. Going forward, predictive algorithms must account for these and other potential areas of vulnerability, especially considering that their insights are the basis for many preventative care treatments.
Along with its predictive analytics, Oscar Health is joining a wave of insurance companies who are looking to bring down costs through preventative instead of reactive care. The United States spends around US $2.7 trillion on healthcare annually. 50–75 percent of this is spent on preventable conditions that are associated with lifestyle, such as smoking, lack of exercise, and unhealthy eating. Insurance companies benefit from incentivizing “lifestyle management” in which patients take care of themselves by making wise decisions on a day-to-day basis. But because the general public cannot usually be trusted with matters of discipline and making informed decisions, insurance companies are partnering with software, telemedicine, and wearable companies to motivate their members and keep them accountable. Already there are many applications which help users keep track of their fitness, water intake, mood, and sleep. Technology is helping people prevent diseases by taking the burden of keeping track of the body on a day-to-day basis such that health will no longer be an annual check-up affair but rather, part of everyday life.
Dr. Brian Litt of the University of Pennsylvania School of Medicine serves as a consultant to a start-up that sells a personal ultrasound called iQ. Although iQ’s target market is doctors, it can also be used by people who have no medical background. According to the company’s website, iQ is “so intuitive, you are already an expert.” There are many benefits to the patient being able to check on themselves and participating more in the process, as discussed in the first section of this paper. Additionally, the personal ultrasound is a big step for preventative medicine because it allows people with previous conditions or risk of cancer to find tumors and other irregularities in their early stages, thus, increasing their treatments’ probability of success. The third section of this paper will discuss the hazards of technologies such as the personal ultrasound being mass-marketed and falling into the hands of people who do not necessarily need them.
Preventative medicine is taken to another level with eugenics and life extension. Advances in bioengineering will make “Designer Babies” a reality in the near future, seeing as there are already labs that genetically edit embryos. Although the controversy behind genetically engineering humans that are smarter and more beautiful abounds, and people have not exactly jumped on the bandwagon, there is slightly less hesitation regarding the practice of correcting for diseases caused by genetic mutations. A Scientific American article rightly concludes “For would-be parents who fear passing on a genetic disease, the possibilities [of genetic engineering] are a potential game changer. Those with access to the gene editing tool could remove any doubt that they had passed on genetic predispositions toward sickle cell anemia, cystic fibrosis, or even breast cancer.” Unfortunately, as it should be expected, the ethical discussions behind genetic engineering have been slow. Thus, any hope of potential applications in the near future will probably be done through a black market that is unregulated by government institutions. Scientists and people who have been affected by genetic diseases are too determined to make use of the technology they have to be concerned with hypotheticals and potential negative externalities.
A similar enthusiasm around fixing human defects through genetic engineering is present in people who are exploring with different ways of extending their life. Science has redefined the way humans regard death. It used to be a natural stage in the life cycle, an end determined by God. But there are people, such as the members of Project Gilgamesh, who see death as a technical problem that can be solved. And it appears as though they may not be totally wrong. Yuval Noah Harari, author of the best-selling books “Sapiens,” “Homo Deus,” and “21 Lessons for the 21st Century” believes peoples’ life expectancy will double in a matter of three generations. He claims that while we will have grandchildren, our grandchildren will probably not have grandchildren because by that time scientific advancements in life extension will be so developed that either they will allow humans to transfer their consciousness into machines, creating a species of cyborgs, and/or humans will have hacked death, thus, foregoing the need for reproduction. But Harari also cautions against the inequality that genetically engineering humans can create. He says, “Healing the sick was an essentially egalitarian project, because it assumed that there is a normative standard of physical and mental health that everyone can and should enjoy. But upgrading the healthy is an elitist project, because it rejects the idea of a universal standard applicable to all, and it seeks to give some individuals an edge over others.” Not everyone can afford to be a biohacker. Many of the health technologies that optimize the self, come with a heavy price. Thus, fitness and other visible signals of health will become a measure of status that unfortunately, cannot be enjoyed by everyone.
What “P4 Medicine” Means for Society
In this section I will discuss in greater length the possible negative externalities of a future of medicine that is preventative, predictive, personalized, and participatory. Some of the potential areas of risk include privacy, intrusiveness, inequality, and a false notion of control.
When predictive services are offered to the general public without a professional intermediary, the actions that users take based on their personal data can often be ill-founded. To illustrate, look at the case of 23andMe, a personal genomics and biotechnology company that offers its consumers a list of the diseases and conditions that they are most at risk of. As can be expected, not every individual will handle this information in the same way. In fact, for that same reason, the FDA banned the 23andMe from operating (although it recently removed this ban). In its report, the FDA said that it had banned 23andMe because the company had not done enough to understand the ways in which communicating sensitive information such as likelihood to get Cancer or Alzheimer’s could influence consumers to undergo preventative surgeries or treatments that were not necessary. One hypothetical example the FDA gave was women who found out they had a high chance to get breast cancer and based on this information decided to look into breast removal surgery. Although the FDA was criticized for exaggerating the potential effects of 23andMe’s service, Dr. Jennifer E. Phillips-Cremins, Professor of Bioengineering at the University of Pennsylvania believes there are many other reasons why companies like 23andMe should be regulated. She believes an individual’s health information and propensity for certain diseases cannot be conveyed through a brochure given that doctors are trained to communicate these kinds of things and explain the prevalence of false positives and false negatives.
The sociologist Nikolas Rose claims that predictive and preventative health will create “…the sense that some, perhaps all, persons, though existentially healthy are actually asymptomatically or pre-symptomatically ill.” This is what Ellen DeGeneres was talking about in her comedic skit, but academic scholars like Rose recognize the serious implications of having a society that lives in a perpetually insecure state about their health. Although it is important to incentivize people to engage in lifestyle management in order to prevent diseases linked to everyday decisions, it is just as important to establish appropriate practices to keep track of one’s health. Otherwise, sensors, wearables, and other health technologies that motivate the user to engage in self-care, will be propagating unhealthy behavior that is driven by obsessiveness and an anxiousness surrounding the duty to be on top of all the real-time data that is coming in and to be on one’s feet in case there is necessary actions to be taken. These feelings will be augmented by the constant buzzing, notifications, and emails that come with signing up to a service that offers to keep track of your every move.
Many are worried by the breaches of privacy that come with having wearables and applications that record so much information about of people’s lives. While medicine, is indeed become more participatory, another party is also increasingly having more power in the healthcare sphere. Technology’s role in the surveillance of ourselves is often downplayed as it is in the interest of the private sector to instill in their consumers a false notion of control over their personal data. Natasha Dow Shull explores the contradiction between a “consumer [who] is taking responsibility yet also delegating the mechanics, rationality, and even the resulting data caches to external corporate entities and the promptings of their algorithms.” While people seek to optimize themselves and have agency in the process, they are at the same time outsourcing decisions and the design of their life to technology companies. Many of the health technologies discussed in this paper seek to empower individuals by giving them the tools to quantify themselves and thus, the ability to improve in many aspects of their lives. Who owns the data and what the companies who collect it can do with it is widely discussed among scholars of a variety of disciplines who recognize that because, in this information age, data is power, the answers to these questions determine the structure of the modern day body politic.
Michel Foucault first coined the term bio-power in the 1970’s. He foresaw a future in which the collection of personal data allowed governments and companies to control their subjects and consumers, respectively. His predictions are coming true as big technology companies such as Google, Microsoft, Apple, and Uber are investing in and disrupting the healthcare sector with the promise of helping people regain their control over their personal health through technology. As a society, we must be weary of the promises that these big technology companies make, seeing as they have much to gain from the amassing of personal healthcare data and the ability to influence people’s everyday choices. Not to mention that sensitive healthcare data stored in such a few number of centralized servers is highly vulnerable to attacks, which will make things such as identity theft much easier. Nevertheless, the resources these companies have in terms of big data, software, and hardware is reason enough for governments and the general public to be optimistic about the kinds of changes these big tech companies can bring to broken healthcare systems.
Conclusion
Yuval Noah Harari claims that: “It is not that we will destroy ourselves in a nuclear war. But we will use technology to transform ourselves into a very different kind of being.” Whether or not we will become cyborgs is still under debate, but it is clear that health technology is giving way to a new kind of medicine that aids humans in their search to optimize themselves. Wearables, sensors, artificial intelligence, genetic engineering, and the internet of things (IoT), are just a few of the emerging technologies that are constructing a future in which medicine is predictive, preventative, personalized, and participatory. As with any other innovative products, health technologies face a curve of implementation in which early adopters, such as biohackers, will enthusiastically engage in digitalizing their life. But if health is to remain a universal human right, everyone must do their part to inform themselves and recognize their agency in shaping Medicine 2.0.
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