Health as a Social Media - Springer Link

Chapter 4

Health as a Social Media Kristen M. Daly

Abstract The pervasiveness of social media networks combined with new health monitoring devices and an increasing understanding of the importance of social influence on chronic disease has created a new situation where health can be integrated into and change our self-identity, our social relationships and our relationship with our communities both local and global, on-line and in-person to a much greater extent than in the recent past. This chapter examines some of these aspects and interactions between health technology and social media and imagines prospective scenarios for how this might impact our culture, society, politics and economics by considering both the potential benefits and the dangers inherent. Health has always played a role in social interaction and culture, to the extent that rules have had to be explicated barring health talk from conversation.1 The TMI (too much information) dining table conversation, falling into details of health ailments, such as social networks, or procedures, is a common comedic trope. Lately, communication technologies such as social networks have become more intimately intertwined with our health, changing our cultural rituals, who we interact with and even how we perceive ourselves in the social structure. The relationship between social networks, culture and infectious disease has been clear for some time. Infectious disease networks map directly onto our social networks, demonstrating who we go to school with, work with, socialize with, live with or near, spend holidays with, share utilities with, eat food with and have sex with. The link between chronic diseases and our social networks and cultural practices is only recently coming to light. At the most basic level genetics have shown familial networks of disease potential, but increasingly researchers are finding that who we socialize with both in person and increasingly online, the built environment of our communities (itself a function of social history), who we went to school with, “The Seven Things You Are Not Supposed to talk About,” This American Life, November 8, 2013. http://www.thisamericanlife.org/radio-archives/episode/511/the-seven-things-youre-not-supposedto-talk-about. 1

K.M. Daly (*) Colorado School of Public Health, Aurora, CO, USA e-mail: [email protected] © Springer International Publishing Switzerland 2015 G. Einav (ed.), The New World of Transitioned Media, The Economics of Information, Communication, and Entertainment, DOI 10.1007/978-3-319-09009-2_4

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and who we live among have direct consequences on our likelihood of suffering from and particularly how we manage a host of chronic diseases including heart disease, obesity, diabetes and even Alzheimer’s (Evans et al. 1997; McClintock 2008; eHealth Initiative 2009; Farmer et al. 2006; Christakis and Fowler 2009). Particularly in the United States, we have tended to take an individual choice view of chronic disease, but evidence demonstrates that what you eat, how much your exercise, the air you breathe, the stress you experience and whether you smoke is very closely linked to your social, cultural and community environment beyond individual characteristics. By the end of 2014, there will be more mobile-connected devices than people on the planet and by 2018, more than half of these devices will be “smart” devices (CVN 2014). Over one billion people participate in Facebook and more than half a billion in Twitter. With health beginning to integrate into this media connectivity, our relationship both to our own health and to the health of our friends and communities as well as our relationship with the health system from the community level to the global is changing. What I hope to do is elucidate some of these changes and imagine prospective scenarios for how the integration of health into our social media networks might change how we view ourselves, our communities, and even our relationship with the larger global community.

Connected Devices: I Am Jack’s High Blood Pressure Diaphragms that alert for pre-term labor, contact lenses that take glucose readings, mobile phone attachments that provide electrocardiograms, toothbrushes that report your brushing habits to your dentist—these are just a few of the devices either available or in the works for self and cloud monitoring.2 More and more health monitoring can be done on mobile devices by patients who are accumulating more and continuous data about themselves. The sensored-self has implications for our view of ourselves, our social network and power dynamics. Just as the wristwatch was about to become completely superfluous with the use of cell phones for time monitoring, our watch may team up with our smart devices to rule us again. “Wearables” have received a lot of press recently and featured prominently at the 2014 Consumer Electronics Show and SXSW. According to research firm Berg Insight, 8.3 million fitness trackers, smartwatches and other connected wearables were bought by consumers in 2012. Media discussion of Apple’s preparation and hiring for a potential iWatch has been rife.3 Ben Hammersley, writing in Wired magazine on wearables, quotes Jonathan’s Swift’s 1726 novel Gulliver’s Travels where the Lilliputians comment on Gulliver’s watch which they assume must 2 http://www.ucsf.edu/news/2011/04/9748/ucsf-team-takes-second-place-national-innovation- competition, http://googleblog.blogspot.com/2014/01/introducing-our-smart-contact-lens.html, http://www.alivecor.com/home, http://www.beamtoothbrush.com/toothbrush/. 3 http://rockhealth.com/2014/02/five-signs-apple-creating-health-product/.

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be “the god that he worships,” because, “He seldom did anything without consulting it. He called it his oracle and said it pointed out the time for every action of his life.”4 Current wearable sensors can measure pulse, blood pressure, balance (Sway), wet diapers and urinary tract infections (Smart Diapers), vertical feet skiied (Epic), miles logged and speed (Nike+), sleep, movement activity (FitBit), air quality and gps location. Our watches might soon be telling us to chill out, put on a sweater, take some sun or get out of it, stand up and walk around, drink water, or take our blood pressure medication. These devices have become incorporated into the Quantified Self Movement where people measure, collect, log and often share this data about themselves on a regular basis. Once the purview of a few pro-active, early adopters, the quantified self is going mainstream and is becoming increasingly automatic. In a recent, casual, small-scale study of diabetics’ use of digital technologies, a number of patients found that entering information on their cell phone was no more efficient or easy for them then just taking out a little notebook.5 But two affordances which allow new sensor technology to create radical change are passive surveillance and connectivity. Passive surveillance where the device logs and sends information without interfering with the patient’s daily life allows for continuous surveillance as opposed to the current norm of scattered point, active surveillance. This information can connect, through the cloud, to doctors, our social networks, and organizations and can be aggregated and analyzed with pattern recognition exceeding human capacity. This is where it gets powerful. One can imagine future iterations of intelligent personal assistants/knowledge navigators like Siri interacting with sensors in and on you equipped with better voice recognition for emotion and well-being, monitoring your adherence to a medical or lifestyle program or making the decision when to alert a doctor or a social network under conditions of concern. This widespread collection of data by individuals has led to a mass of data not even dreamed of by researchers. In the few years it was in business between 2009 and 2013, Zeo, a maker of sleep tracking software and hardware, had collected more data on people’s sleep patterns than all the sleep research ever conducted (Ranck 2012, Kindle Location 302). Anne Wojciki of direct-to-consumer genetic testing company 23andme believes that by aggregating genetic data from their consumers who can voluntarily agree to share their genome (she says that over 85 % of users do) that time-consuming clinical trials will eventually be as fast as a data query and more effective because they will have much greater numbers.6 Websites like Cure Together (acquired by 23andme) and Patientslikeme have begun doing their own research using community members with similar conditions (Ranck 2012). And patients on social networks such as these can share treatment results and side-effects. This has been referred to as the open sourcing of clinical trials or “social

http://www.wired.co.uk/magazine/archive/2014/01/features/the-third-wave-of-computing. Novo Ed, Mobile Health Without Borders, By Eric Leroux and Homero Rivas, Stanford University, Spring 2014. 6 Anne Wojciki in Conversation with Joyce Ho, 2012 MedicineX Conference, Stanford, CA. http:// medicinex.stanford.edu/videotalks/. 4 5

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medicine.”7 There is expectation that high level analysis of sensor data combined with genetic and environmental information, and supercomputer level artificial intelligence, could lead to a highly personalized medicine and wellness strategy.

Big Data and Cloud Storage: I Am Jack’s Quickening Pulse Much of this data uploads to the cloud often being kept by corporations. Much like Amazon or Netflix use data to make personalized book and movie recommendations, this health and activity data might know you better than you or your doctor know yourself detecting patterns too subtle for humans to determine. This brings up questions of identity. In a popular series of articles in Reader’s Digest in the 1960s called Joe’s Organs by J.D. Ratcliff, human organs write about themselves in the first person. This concept was parodied in the book and movie Fight Club (Palahniuk 1996; Milchan et al. 1999), where, in the movie, we hear from Jack’s Raging Bile Duct, Jack’s Cold Sweat, Jack’s Complete Lack of Surprise, Jack’s Smirking Revenge, and Jack’s Broken Heart to communicate the narrator’s feelings. Author Chuck Palahniuk and then director David Fincher use this ruse as a way of demonstrating the creepiness of the narrator’s self-alienation and lack of control. The saying is introduced in the movie when the narrator comes across some old articles and the first he reads is “I am Jack’s medula oblongata. Without me Jack could not regulate his heart rate, blood pressure or breathing.” Now your body really can communicate with other people or machines or the cloud without you—glucose monitors, heart rate monitors and, already in use in the military and to a lesser extent in civilian life, micro and nano sensors that can measure temperature and soon stress levels, inflammation and disease. The positive aspects would be early indications of disease and improving opportunities for prevention. For example a thyroid sensor could interact with a pump to manage levels, reacting to different situations, without the patient and doctor having to calibrate.8 But there is definitely a threatening aspect to the idea of sensors inside you communicating with the cloud and other smart machines. In the Homeland television series Spoiler Alert, a terrorist gets hold of the serial number of the American vice president’s internal pacemaker and a hacker overrides the device and kills him over the Internet. This is an extreme example, but the information coming from these devices is powerful and the concept of information going both ways, coming from and to internal devices, is not such a far out concept leading to a real change in conceptions of individual agency and volition. Analysis of this data can be used for commercial purposes as well. In the movie Minority Report (de Bont et al. 2002), the advertisement board in the Gap recognizes the customer by his iris scan and directs an ad that is personalized to his shopping Andrew Keen of TechCrunch interviewing author Tim Ferriss (2010): http://techcrunch. com/2010/12/13/keen-on-tim-ferriss-how-to-turn-your-body-into-a-startup-tctv/. 8 Software like Carelink from Medtronic allows passive monitoring and tracking of diabetes patients’ insulin pumps and glucose monitoring system and connects with healthcare providers. http://www.medtronicdiabetes.com/treatment-and-products/carelink-personal-diabetes-software. 7


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history. As C.C. Lagator points out in an article on the financial importance of health monitoring wearables, one could imagine with an iWatch, Apple might know not only what store you are in and your shopping history in order to direct a personalized ad at you, but then also take your pulse and skin temperature to determine your response to the ad or to trying on a certain item.9 According to Jeffrey Chester, the executive director for the Center for Digital Democracy, companies like Nike and Fitbit have privacy policies for their athletic sensors that are broad enough that they could eventually sell health data.10 Scott Peppet, a University of Colorado law school professor, has recently published about the lack of privacy policies existing for sensor technology. He writes: Sensor data capture incredibly rich nuance about who we are, how we behave, what our tastes are, and even our intentions. Once filtered through Big Data analytics, these data are the grist for drawing revealing and often unexpected inferences about our habits, predilections, and personalities. I can tell a lot about you if I know that you often leave your oven on when you leave the house, fail to water your plants, don’t exercise, or drive recklessly (Peppet 2014).

He stresses the incredibly accurate and wide-ranging inferences about everything from mental state to social status that could be made from sensor data applying computer analysis. As he has said of Fitbit data at a 2013 FTC conference on the Internet of Things, “That data is so high quality that I can do things like price insurance premiums or I could probably evaluate your credit score incredibly accurately (Liebelson 2014.)”11 As Peppet stresses this information would be of great interest to insurance companies, employers and law enforcement (Peppet 2014). The new healthcare laws allow companies to price health insurance differently for employees who have better health habits, which encourages companies to monitor employees health status. In 2013, CVS announced a new policy where employees must share weight, blood pressure, and body fat metrics with the company or pay a $600 fine. Companies like Limeade, subtitled “A Refreshing Approach to Corporate Wellness,” offer products for employers to sync, monitor and analyze fitness monitors and health applications.12

Community and Social Health Networks Another aspect to self-monitoring could be an identification of ourselves with these metrics and a new sociality based in health media. Anthropologist Paul Rabinow has explored the nature of and potential for what he calls “biosociality” since the http://www.riskreversal.com/2014/02/07/why-apples-wearable-is-a-bfd-aapl/. http://www.motherjones.com/politics/2014/01/are-fitbit-nike-and-garmin-selling-your-personalfitness-data. 11 http://www.ftc.gov/news-events/press-releases/2013/11/ftc-announces-agenda-panelistsupcoming-internet-things-workshop, quoted in (Liebelson 2014). 12 http://www.limeade.com/. 9

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beginning of the Human Genome Project. He writes of the genetic aspect to biosociality, “… it is not hard to imagine groups formed around the chromosome 17, locus 16, 256, site 654, 376 allele variant with a guanine substitution (Rabinow 1996a, b).” Ethnologist Niclas Hagen notes how Rabinow’s vision has been supercharged by new technology into what he calls “digital biosociality (Hagen 2010).” Rabinow sees the potential for a redefining of power relations with patients forming groups and relationships based on health conditions and organizing for research or treatment funding. 23andMe enables the formation of social groups by genotype including groups for people with BRCA1 and BRCA2 mutations. Social groups organized around Huntington’s disease, Parkinson’s disease and diabetes have already banded together to lobby for legal actions and greater research funding (Ranck 2012). With the longtail affordance of digital technology applied to social networks, people with rare diseases are finding each other and founding communities to share treatment successes and knowledge and support each other. As health and technology researcher Jody Rank writes, “As tracking tools and platforms become more ubiquitous the ability to share data about the body is growing and creating new forms of sociality around the body, health and disease (Ranck 2012, Kindle Location 263.)” Sean Ahrens, a software developer and Crohn’s patient has integrated a number of aspects of social media into his application Crohnology.com. He has created a real time network where patients can record how they are feeling, what medications they are taking, what they are eating, stomach pain, bowel movements etc. The primary feature is a slider where either by SMS or mobile app patients can record how they feel from yuck to fantastic. This connects the patient with other patients in his or her friends circle who are feeling the same way at that moment in time. Crohnology connects patients with others in their geographic location for real world meetups. Crohnology also graphs this information for the patient as well as anonymously aggregating and analyzing the data to provide information on different medications and lifestyle aspects and their effect on well-being. As Ahrens notes, drug trials can cost easily over a billion dollars to bring a single drug to market.13 For this reason very few drugs or therapies ever reach the level of trials. One of Ahrens’ motivations for starting to monitor his own experience was his personal trial of pig whipworm eggs, an alternative therapy. Ahren’s plan is to combine this data on medications, well-being and lifestyle with microbiome and genotype data to determine why treatments work for some people and not others and “collectively find the cause or cure.”14 Ahrens views Crohnology as taking patients’ experiences, their anecdotes and making them into science—bridging the patient (anecdotes)/doctor (science) divide. Where a doctor only has point sources of information when the patient visits the office, he or she now can see a continuous chart. As he says, “Everyone has these “In 1975, the pharmaceuticals industry spent the equivalent of $100 million in today’s dollars for research and development of the average drug approved by the U.S. Food and Drug Administration, according to the Tufts Center for the Study of Drug Development. By 1987, that figure had tripled, to $300 million. By 2005, this figure had more than quadrupled, to $1.3 billion.” http://www. manhattan-institute.org/html/fda_05.htm. 14 https://www.youtube.com/watch?v=Zb2hUEXQ8yc. Mobile Health Stanford. 13


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stories, this data.”15 This concept of social media allowing health to be a form of storytelling pervades the marketing for many of the fitness wearables.16 Michael Horvath founder of Strava, a ride and run tracking application with many social features, said in a BBC interview in 2013, “And so that again goes back to storytelling and the social aspect which is at the core of Strava—that connectedness to other athletes.”17 Dr. Jay Parkinson of innovative healthcare practice Hello Health in Brooklyn, New York says of the traditional appointment model of the doctor/patient relationship, “Our profession, at its core, is fundamentally flawed relative to how today’s world communicates and functions (Hawn 2009).” Health as a continuous narrative to be shared as opposed to point measurements taken by a doctor once a year or when a person is particularly sick is a change in how we view health and sickness— not separate from our social being but intertwined and essential. Many online social forums exist for people with different ailments. Website Daily Strength has over 500 communities on its site.18 Alliance Health Networks provides networks for around 50 conditions and has 1.5 million registered users. The award for the most social media savvy and prolific of the diseases has to go to diabetes. According to the WHO, about 347 million people worldwide suffer from diabetes. Because it is a long-term chronic disease which is so complicated to manage— balancing on an hourly basis blood monitoring, with food intake, exercise, stress and medication—social media, and community can be of great value to diabetics. One of the biggest communities is dLife: It’s Your Diabetes Life! with tens of thousands of members. Ten to fifteen years ago some individuals started blogging about life with diabetes receiving support from sharing information with friends and followers. Now there are thousands of blogs, forums, news sources and twitter handles.19 As journalist Emma Greene notes in an Atlantic article, there are even a number of tweeters of diabetes humor like @crankypancreas, @_diabadass, and @ninjabetic and a weekly tweetchatt under #dmsa “diabetes social media advocacy.”20 These social media forums allow patients and their friends and family to share information, experiences, difficulties and successes and find each other across distances. As Jody Ranck notes online diabetes advocates have also influenced the medical device market bringing attention to the need for more user-friendly devices and inspiring tech design firms to enter the medical device realm (Ranck 2012, Kindle Locations 278–282).21 There has been active debate over the value of these social networks. A metastudy in the Journal of Biomedical Informatics found that, “Benefits have been reported for psychosocial management via the ability to foster support and share information; Ibid. “The app really taps into the insight about skiing and story-telling at the end of the day and brings into the twenty-first century with technology and sharing.” personal email from Kirsten Lynch, CMO of Vail Resorts about their application Epic Mix. 17 http://www.bbc.com/news/technology-21716686. 18 http://www.dailystrength.org/support-groups. 19 http://www.webicina.com/diabetes/. 20 http://www.theatlantic.com/technology/archive/2013/10/cranky-pancreas-tweets-how-the-diabetescommunity-uses-social-media/280773/. 21 http://www.diabetesmine.com/2007/04/an_open_letter_.html. 15 16

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however, there is less evidence of benefits for physical condition management (Merolli et al. 2013).” In response to a National Public Radio piece in 2012, in which Dr. Jason Bronner from UCSD is quoted saying, “There’s no proof in diabetes that social networking is helpful,” a number of diabetes advocates wrote an open letter in which they list fourteen studies showing benefits of social networking for different groups of diabetics.22 Although patients can share information with their doctors using health sensors and applications, the great potential for synergy would be if doctors, healthcare policy makers, patients, families and the general public, overlapped, sharing information and narratives in social media. Unfortunately, this does not yet appear to be the case. Data tracking firm Morningside Analytics maps communities on the Internet by analyzing their online sharing habits. When they mapped the online diabetes community, they found three clusters—“people that have the disease and their advocates; people that make money off of it—everything from biotech to pharma to hospitals, the medical professional and healthcare industry; and then the people who don’t want to get it, which is general nutrition, fitness, and healthy living oriented [people] (Greene 2013).”23

Lauren Silverman (2012, December). “Social Media Help Diabetes Patients (And Drugmakers) Connect.” http://www.npr.org/blogs/health/2012/12/03/166241115/social-media-helps-diabetespatients-and-drugmakers-connect. 23 http://www.theatlantic.com/technology/archive/2013/10/cranky-pancreas-tweets-how-the-diabetescommunity-uses-social-media/280773/. 22


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Morningside Analytics/The Atlantic These clusters did not have a lot of overlap in terms of sharing information (retweets, mentions, etc). What Morningside Analytics chief scientist John Kelly gleans from this is that the social media is providing a social outlet for patients and their families, but isn’t necessarily informing or being informed by the scientific and healthcare community at least on the level of social media (Ibid). In 2012, Alliance Health Networks bought Medify, a company that uses machine- learning algorithms to help people query health information from the free research papers available in the National Library of Medicine. Alliance Health Networks wants to correlate these algorithms with network discussions. They hope to provide users with better information specific to their situation. They also will provide doctors, pharmaceutical companies and healthcare companies with more information about how patients make medical decisions. One can imagine the positive benefits of this, bridging the gap noted above, but also some opportunities for corporations to be able to influence users of social networks who may not be aware of the underlying economics where other users or the platform itself may be sponsored by medical companies, and are operating for profit.

Identification: I Am My Cranky Pancreas I take my Victoza before I go to bed; the needle is a joke, I barely feel it. I am so excited about the pen I even got a special sharps container. I’m silly like that, but maybe it’s a good thing that I’m excited about the new medication because that will help me with compliance which has been my main problem. And this thing is working! I hadn’t waken up with a BG of less than 150 in a long time, I hadn’t seen anything below 200 after I ate either. Now I’m seeing a bunch of 90′s when fasting, and my post-meal levels don’t go over 160. The only fear I had was the pancreatitis and pancreatic cancer risk, but last week I welcomed the news that the FDA eased the concerns for GLP-1 medicines. So far, so good. Let’s hope my next visit to the doctor shows an improved A1C.

From blog “Cranky Pancreas: Stories of a Misbehaved gland and my life with type 2 diabetes,” March 6, 2014.24 As Gretchen Case who studies performance, disability and medical culture notes, in Thomas Mann’s novel The Magic Mountain about a tuberculosis sanitarium, the patients identify themselves socially through their x-ray pictures, carried in pocket-size, and fever charts—the outwardly visible aspects of their inner, invisible disease. A patient says to the protagonist, Hans Castorp of his x-ray picture, “Ah, you carry it in a case. Like a certificate, as it were—a sort of membership card.” And when Hans’ advances are rejected by his love interest, Clavdia Chauchat, she says

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to him, “You’ll see a nasty rise in your fever chart this evening.”25 In the sanitorium the societal bonds were strengthened by the sharing of health data, data perceived as revealing the story of the individual more intimately than just conversation or outward appearance. In the late 1980s in New York City restaurant owner Florent Morellet began posting his CD4 count, a measure of his daily health status as someone with HIV, as a series of numbers on the bottom of the wall menu board. He didn’t advertise what these numbers were, but, if asked, the waitstaff would tell diners what the numbers represented. Regulars could see posted publicly Morellet’s health status. This was quietly revolutionary at the time when HIV carried a strong stigma and when there was still no effective treatment. In our current online social environment, this type of sharing is commonplace. The blog post above represents a quite personal, but not unusual amount of personal health information being shared with the online public. We have become much more open about health status. Christopher Mayes, an academic who studies biopolitics, public health ethics and the sociology of food, self-experimented with The Eatery, an app where you take a picture of your meal and other users rate the health level from “fit” to “fat.”26 He writes, “Innocuous habits such as snacking on crackers with peanut-butter are not only judged against purported values of nutritional health but we willing offer up these practices for judgement. Not unlike the penitent turning to the confessional, perhaps we recognise a value in having these activities judged and scrutinized by others.”27 Mayes likens this to Michel Foucault’s view of Western society as a confessing society. Foucault writes: We have singularly become a confessing society. The confession has spread its effects far and wide. It plays a part in justice, medicine, education, family relationships, and love relationships, in the most ordinary affairs of everyday life, and in the most solemn rites; one confesses ones crimes, one’s sins one’s thoughts and desires, ones illnesses and troubles; one goes about telling, with the greatest precision, whatever is most difficult to tell. (Foucault 1978, p. 59)

Foucault, who died of AIDS related complications in 1984, before online social media or even reality TV, elucidated the power dynamic instigated by the confession starting from the ritual of the Catholic Church. A confession implies guilt, and Foucault viewed the confession as the public’s voluntary subjugation to power. This dynamic is something to consider not only explicitly in relation to the above concerns of privacy and security in the realms of employment and government and insurance services, but also implicitly in our social relations.

Case, Gretchen. “The Magic of X-ray Vision.” Virtual Mentor 9.11 (2007): 773–775. Mann T. The Magic Mountain. Lowe-Porter HT, trans-ed. New York, NY: Vintage Books; 1969:241. and second quote p. 338. 26 http://techcrunch.com/2011/11/01/the-eatery-a-photo-app-that-promises-to-improve-your-health/. 27 http://adisorderofthings.wordpress.com/2013/06/17/a-note-on-everyday-life-eating-and-smartphoneapps/. 25


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By confessing our health status out to the public or to our social circles, we are strongly introducing our health status into our public identity. You will know me by my blood sugar count. Dating sites might soon include all kinds of internal, invisible aspects of an individual. A potential suitor might request my Beam Brush or Hapifork data and find out I’m an irregular brusher or a piggish eater. Or I might filter prospectives by pulse or blood pressure or certain genotypes.

Social Support: We Are My Growling Stomach The latest wearables and health apps let us share our fitness activities or health metrics with others in our online social circles. With the Nike + app, friends can like your run on Facebook and you’ll hear applause in your earphones. Vail Resorts Epic Mix lets friends know where you are skiing and how much you’ve skied as well as sharing photos. Strava allows people to comment on and “kudo” your run or ride and instagram photos are shared automatically if taken during a run or ride and “matches activities with those for anyone you’ve ridden or run with.”28 Through Fitbit I can see how active my in-laws are on their vacation or at home. Other types of sensors can alert caretakers when someone has fallen or provide insulin use and glucose monitoring to patients’ doctors (Medtronic CareLink). One can imagine, especially with the a different societal perception of privacy, that soon my Epic Mix with an internal sensor might also share my vitamin D levels or stress hormones or testosterone levels. My glucose monitor might tweet my levels automatically so people can give feedback and recommendations. My Nike + might also let friends know my heartbeat throughout a run, what kind of calories I’m burning, O2 levels and if I’m experiencing a runners high. Already many people post their weight-loss goals and activities on Facebook for support and public accountability and encouragement. The Withings scale can be set up to automatically tweet out your weight whenever you step on it. What are we doing here? Partly we are parcelling out responsibility for our health-related activities—sharing the burden—outsourcing our self-will or self-control. Or maybe we are just bragging, turning every last aspect of life into a competition.29 In the HBO series True Detective (Pizzolatto and Fukunaga 2014), Detective Rust Cohle stops and takes his pulse after stressful events. He is portrayed as someone who knows himself, his strengths and more importantly his weaknesses and can control them. What if his shirt just lit up when his pulse rose?30 Then we could all help him calm down. Self-control as a group effort.

http://www.bikeradar.com/road/news/article/strava-releases-new-app-merging-ride-and-run-40381/. There have been instances where this competition has gotten out of hand. One cyclist died trying to regain his Strava King of the Mountain title and the family sued Strava. The suit was dismissed. Another cyclist sped through a red light and killed a pedestrian while using Strava. 30 The GER Mood Sweater does this but based on the same type of sensor technology as lie detectors: http://sensoree.com/artifacts/ger-mood-sweater/. 28

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As in Mann’s novel, death becomes an aspect of this social sharing of health data. I’ve had shared with me on Facebook posts from a young mother losing her battle with cancer who had organized for certain friends to be in charge of assembling photos, stories, etc from different times in her life to collect for her daughter. An aspect to the social sharing of health data may be a sense of digital immortality and leaving a mark in a digital ripple beyond family and friends.

Crowdsourcing Another affordance of digital technologies, crowdsourcing, is affecting health in a number of ways. One example is the social medicine mentioned above, where specific disease sufferers can aggregate and analyze their health metrics using different therapies. On a more direct level, PulsePoint is an application in use in a number of communities in the United States that alerts registered users if there has been a sudden cardiac arrest reported in a public space in their vicinity so that they can provide CPR. The map also gives directions and locates any Automated External Defibrillators (AEDs) in the area.31 In the Netherlands, they have mapped all the AEDs, also through crowdsourcing, and anyone with a smartphone can download an application that will tell them where the nearest AED is. Those with a smartphone digital compass and Layar can see the AED in augmented reality.32 Google Flu Trends analyzes searches for specific terms to estimate geographically flu trends without people even being aware that they are participating.33 A recent study by the Center of Digital Behavior at UCLA has found that a geo-located analysis of terms related to drug use and risky behavior in tweets can be used to predict HIV prevalence (Brabham et al. 2014). Germtrax allows people to send or tweet in illness information which it then live maps as well as graphs over time. The crowdsourced mapping applications have been useful in disease surveillance as well as emergency situations. In Haiti after the 2010 earthquake a number of open-source platforms allowed people to text in information that could be used by rescue groups and coordinators. Ushahidi is a crowd-mapping portal created to track post-election violence in Kenya. They quickly created Haiti.Ushahidi.com to track and map search and rescue operations and people in need of rescuing. The maps relied on Open Street Map which at the time of the earthquake had only a few roads labeled. In fact, there were no accurate maps for many parts of Haiti including Port-au-Prince at the level of small streets. Haitians within Haiti and abroad, as well as rescue http://pulsepoint.org/. http://www.aed4.us/?page=overAED. 33 Recent research into the inaccuracy of Google Flu predictions brings up interesting questions about big data analysis as well as the constantly changing Google algorithms and auto-suggest http://rt.com/ news/google-flu-trends-science-105/ Alexis Madrigal notes how this must be taken in perspective considering how Google Flu Trends in conjunction with CDC data can improve prediction: http:// www.theatlantic.com/technology/archive/2014/03/in-defense-of-google-flu-trends/359688/. 31 32


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workers on the ground, quickly filled in the information within a day or two.34 Crisis groups formed in people’s living rooms where volunteers helped to manage, enter and coordinate information.35 These are examples of health emergencies where people could be connected through crowdsourced, geolocated information. A strict definition of social media might exclude such applications, but I think we must consider the power even of weak ties that bind people together across networks. Knowing that the data we log even unconsciously might in some way contribute to the public good may make us more aware of our community and give us more of a sense of agency. Or, for example, if you are registered with PulsePoint, you realize that you are tying yourself into your community in a way that may be life or death for someone you probably have never met. Even such things as the US Embassy in Beijing’s automatic twitter feed from their rooftop air pollution monitor helped bring the air pollution crisis to the public attention and forced Chinese government officials to take the situation seriously.36 These are ways that weak ties of online social networks can create communities and improve health situations at the community level. The demonstrate the potential for large-scale, small-size participation afforded by social media in community health.

Global Health Networks The above examples indicate crowdsourcing in the developed world and the connections that can be made between the developed world and the developing world, but even peer-to-peer within the developing world, campaigns have asked for help from the crowd in recruitment at the community level. For example, the “Smile for You” campaign provides cleft palate surgery for children in South Africa. The clinics take place a specific time and place and they had had some trouble in finding cases in the time frame. Vodocom donated what is usually advertising space on one million “Please Call Me” text messages popular in the developing world because they are free, which the program used to ask recipients if they knew children in need of the surgery. More than three times the number of children were identified in a very short period (Kahn et al. 2010).37 Mobile media can be used in the developing world to connect community members to each other to access scarce health resources and share important information. Crowdsourcing has potential for telemedicine where experts can weigh in, augmenting the expertise of a local health provider. Eric G. Bing, the director of global health at the George W. Bush Institute gives the example of community health http://www.forbes.com/2010/02/01/text-messages-maps-technology-breakthroughs-haiti.html. http://blog.ushahidi.com/2012/01/12/haiti-and-the-power-of-crowdsourcing/. 36 @Beijingair twitter feed with over 36,500 followers on 3-29-2014. http://www.nytimes. com/2013/01/13/science/earth/beijing-air-pollution-off-the-charts.html?_r=0. 37 Vital Wave Consulting. The opportunity of mobile technology for healthcare in the developing world. Washington (DC) and Berkshire(UK): UN Foundation–Vodafone Foundation Partnership; 2009. 34 35

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workers (generally a trained local community member, not a doctor or nurse) being able to perform at-home pap smears using vinegar on the cervix where lesions appear white. In questionable cases, a high enough quality photo can be taken with a cell phone that experts could determine if follow-up were necessary. Bing suggests that this could be done by crowdsourcing where volunteer experts who log in their credentials could view the photos and make assessments.38 As Kahn et al. writes: Social networks can also foster peer-to-peer interactions among both providers and patients. Discussions can extend beyond a local area to include clinician specialists and can provide support for improved health care practices. Similarly, patients (or community members) can support each other on specific behaviors—whether preventive (such as smoking cessation) or management of a common disease (such as diabetes) (Kahn et al. 2010).

These links can connect communities and health workers into larger networks with more resources enabling community health workers and local providers to provide more extensive care. In much of the world, doctors and nurses are a scarce commodity. Task-shifting to community health workers brings health information and resources out of the center into the periphery and into the home. Here in-world social networks come into play where a community health worker might notice a sanitary situation that isn’t optimal or watch a baby while a mother gets something fixed or notice a nutritional deficiency. As Dr. Paul Farmer, founder of Partners in Health, emphasizes, a big part of mobile healthcare in the developing world involves human technology of people bringing care into communities. He wants to avoid restricting the definition of mHealth and broaden it to include “human capital development.” He says, “The ‘m’ should also involve those who can be mobile, like community health workers. They are our biggest allies in trying to roll out new technology to reach more and more people, especially those who are living in poverty and bear the biggest burden of disease.”39 Technology by bootstrapping into social media networks can increase the value and reach of in-world social networks to affect health in the developing world.

Health Innovation and Financing Crowdsourcing is affecting the financing of many of health monitoring and sharing devices and social media health applications. Health devices and apps, with some limitations due to the legal limitations on medical diagnosis devices or drugs, are being funded on crowdfunding sites like Kickstarter and Indiegogo as well as specialty medical crowdfunding site MedStartr. There is also a hacker aspect to

NovoEd course, Mobile Health Without Borders, By Eric Leroux and Homero Rivas, Stanford University, video Fireside Chat on mHealth with Eric Bing, The George W. Bush Institute, SMU. 39 NovoEd course, Mobile Health Without Borders, By Eric Leroux and Homero Rivas, Stanford University, video Global mHealth by Dr. Paul Farmer. 38


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garage development with healthcare hackathons, competitions and challenges.40 Even larger scale funding increasingly resembles that of Internet start-ups with specialized accelerators and incubators like Rock Health, StartUp Health, Blueprint Health, and Healthbox and general accelerators/seed funders like Y Combinator and Techstars getting involved in the space. Watsi, a non-profit funded by Y Combinator lets people crowdfund medical procedures for people in the developing world.41 This is a divergence from the way healthcare research and innovation has happened and opens up the possibility of many more people becoming involved—getting ideas for health problems to be solved from their social networks and being empowered by information and resources coordinated by online social networks to participate and possibly help solve a problem. Although legal aspects and government policies have lagged this type of innovation and will present obstacles, the Pandora’s box has been opened and legislatures and policy makers will have to catch up.42

Conclusion The integration of health into our social media networks through new digital technology is changing our social identity, our relationship to our communities both in-person and online, and even our agency in global networks. There are potential dangers inherent, but also great potential for improvement as health networks enhance the doctor-patient relationship as well as extend beyond it to broader networks which may help improve healthcare at the level of communities and populations. We all become e-patients as we share more about our health, both good and bad, through our social networks. While in once sense we turn over this data to pattern recognition software beyond human capacity, we also give agency to problem-solvers and innovators who can create change without big outlays of money or traditional power networks.

“The Qualcomm Tricorder XPRIZE is a $10 million global competition to stimulate innovation and integration of precision diagnostic technologies, helping consumers make their own reliable health diagnoses anywhere, anytime,” http://www.qualcommtricorderxprize.org/competition- details/overview; MIT’s H@cking Medicine innovation incubator, http://hackingmedicine.mit. edu/; InnovateNYP—New York Presbyterian Hospital’s hackathon, http://innovatenyp.challengepost. com/; Brigham and Women’s Hospital Hackathon, http://disruptingmedicine.org/hackathon/. 41 www.watsi.org. 42 For a short discussion of the current situation please see this blog post by Dell’s Chief Medical Officer Andrew Litt: http://blogs.computerworld.com/healthcare-it/23701/when-mobile-appmedical-device-future-healthcare-may-depend-answer. 40

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All technology is a story of culture, politics, economics and society—health technology even more obviously so. We must be aware of power dynamics and incentives as health becomes so intimately entwined with our social media networks, networks we haven’t even fully realized the power of or dangers inherent in.

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