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Facebook, Privacy and Health

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This report, published via Enspektos' Path of the Blue Eye Project in 2011, focuses on how health content is shared (or not shared) via Facebook.

This report, published via Enspektos' Path of the Blue Eye Project in 2011, focuses on how health content is shared (or not shared) via Facebook.

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Facebook, Privacy and Health Facebook, Privacy and Health Document Transcript

  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveFacebook and Health Just Between Us: Facebook,Privacy Essentials Health Information, and Privacy SA Conversation About Health Privacy:Whos In? ocial media has the potential to be a valuable tool for theConversation on e-patients.net led bySusannah Fox of the Pew Internet & healthcare field. Platforms like Facebook and Twitter enable patientsAmerican Life Project focusing on to communicate directly with doctors, share information with oneimplications of Facebooks evolving another, and form support networks. Online medical record keepingprivacy settings for health. Learn More and personal health records enable patients to have more responsibility for and ownership of their health, and to coordinate theThe Social LIfe of Health efforts of different doctors.Information, 2011The Pew Internet & American Life However, these tools have significant flaws and limitations. OnlineProjects 2011 report on the habits of information may be inaccurate or misleading, and social networksonline health seekers, including how they and online health resources carry privacy risks. Moreover, insurers,use Facebook. Learn More employers, and others may gain access to patientsʼ health information on social networks more easily if it is attached to theirHealthcare Social Media Sites Neglect real name.Privacy ProtectionsArticle published in February 2011 by The tension between the promise and peril of the Internet and socialInformation Week focusing on how manyhealth-based social networks neglect to media as a health resource is most pronounced in the case ofprovide adequate and complete privacy Facebook, the largest social network and arguably the mostprotections. Learn More transformative force at work on the Internet today. Facebook has attracted hundreds of millions of users who may never have considered sharing personal information online before. But, Facebookʼs business model is predicated on enabling marketers to track usersʼ behavior, and tying it to real offline identities. Facebook has steadily pushed its users to make more of their posts and behaviors public, often by way of unilateral changes to usersʼ privacy settings. Furthermore, Facebook transmits usersʼ profile IDs and Web browsing behavior to marketers, sometimes intentionally, sometimes inadvertently. Authors: Ethan Hein, Jayme Hummer and Merry J. Whitney A Path of the Blue Eye Project Publication Produced by Enspektos, LLC www.pathoftheblueeye.com www.enspektos.com
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyWith Facebookʼs rapidly growing popularity, it may seem surprising that the large majority of users do notsearch for or share health information on the site. For example, according to a May 2011 study published bythe Pew Internet & American Life Project, only 15% of social network users go to sites like Facebook andMySpace to get health information. Why? Well, it may be because this content is not shared widely on thesesites.Another major limiting factor is the concern over privacy. According to research within the study, conducted bythe Path of the Blue Eye Project, Facebook users are afraid that marketers, employers, insurers, or others willfind and misuse their information. For some, Facebookʼs uneven track record on user privacy shows thesefears to be well-founded.The Internet As a Health Resource: the De Facto Second OpinionAccording to a 2009 study published by the Pew Internet Project, seeking health information is the third mostprevalent activity among American Internet users, after e-mailing and browsing search engines. Eight out of tenInternet users report seeking health information online—either for themselves or on behalf of children andother dependents. The Pew report describes the Web as “the de facto second opinion.”Pews study indicates that the tendency to seek health information and emotional support varies acrossdemographic groups. Fewer than half of African-American and Latino adults seek health content online. Thesame is true for senior citizens, persons with disabilities, and those living in households with an annual incomeof less than $30,000. This is likely due to a generally lower rate of Internet usage among these groups. Thestudy further notes that as more mobile phones become capable of Web browsing, seeking health informationonline is likely to become more widespread among these less-connected groups, just like adoption of mobilephones has become nearly universal among Americans of all backgrounds.A 2009 study by Manhattan Research indicates that health information seekers now turn to the Internet morethan physicians. The study also shows that more than 80 million adults in the U.S. use social media toresearch health-related issues. They create or use content on health blogs, message boards, chat rooms,health-specific social networks and online health communities. Between 2004 and 2009, the U.S. consumermarket for online health resources nearly doubled from 90 million to nearly 160 million. 2
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyThe Manhattan Research study also found that patients use various electronic health resources to informconversations and decisions at the doctorʼs office. Virtually all U.S. physicians report that at least some of theirpatients bring health information they found online to an appointment, and more than two-thirds believe thistrend to be a positive one. Additionally, about four in ten physicians communicate with patients through e-mail,instant messages, or secure messaging services.In the press release accompanying its study, Manhattan Research reported: “Thereʼs a sizable market ofconsumers who are interested in connecting with their doctors online, so physician acceptance will go a longway in pushing this type of communication forward. … Marketers should be aware that online healthinformation is playing an increasingly bigger role in the doctorʼs office, so providing online patient educationtools and resources, such as a doctor discussion guide, can help brands become part of the treatment decisionprocess.”Pew Internet reports that e-patients have taken to social technologies to pool their opinions and experiences.Among survey participants, 60% consume social media and 29% have contributed content. Social media isbecoming a popular method of crowdsourcing proveriders ratings. Nineteen percent of e-patients consultrankings and reviews of providers, and 5% post such reviews. Eighteen percent of patients consult reviews ofhospitals, and 4% post them.More information on Americans online health research activities was provided in a 2011 National ResearchCorp Ticker survey, which indicates that only one in five Americans use social media websites as a source ofhealthcare information. Of those who did, 18% each used Twitter and MySpace. However, hospital web-sitescontinue to be a much more highly used and trusted source, with half of respondents preferring them to othersources. Respondents also continue to prefer traditional advertising sources like TV, newspapers, and radio toonline advertising, since they see advertising as an intrusive presence in social media.Mobile Phones and HealthThe next rapid growth in online health engagement is likely to be in the mobile sector. At present, nearly one inten cell phone users have a health app. As Internet-enabled smart phones drop in price, we can expect theadoption of health apps to expand significantly. 3
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyPew Internet reports that 17% of respondents use mobile phones to find health information. Mobile healthusers are over represented among the young, minorities, urban residents and upper socio economic status.There are no male-female differences in mobile health adoption.Mobile phones may change the nature of online health searches. Pew cites statistics from Yahoo! showing thatthe top five most common health searches on the mobile version of their site include "pregnancy," "herpes,"and "STD" (sexually transmitted diseases). None of these topics appear in the top five health searches on thenon-mobile version of Yahoo!. This discrepancy is most likely due to the need for discretion; a mobile phonecan be used without family members or coworkers looking over oneʼs shoulder.Personal Health RecordsThe healthcare profession lags far behind other industries in adopting electronic record keeping. In recentyears this trend has started to shift, with a launch of several high-profile services offering online personalhealth records (PHRs). Using PHRs, patients can have effortless access to their health records and can feelmore ownership of and responsibility for their own care. As of 2010, 7% of adults had used a PHR, and thatnumber is increasing.PHR users report that they are more active in taking steps to improve their health and asking questions of theirphysicians, according to Consumers and Health Information Technology: A National Survey by Lake ResearchPartners. The study suggests that PHR adoption is most widespread among higher-income people who arealso the more frequent Internet users overall. However, the greatest benefits of PHRs could be realized bylower-income adults, sufferers from chronic conditions, and those without a college degree. While privacy is aconcern for two-thirds of Lake Researchʼs respondents, a majority of PHR users do not express worry over theprivacy of their records. And among non-users of PHRs, 40% express interest in using one.A presentation developed by John Moore of the California HealthCare Foundation, indicates that 75% of PHRnon-users cite privacy concerns. Those who do trust their PHR mostly cite the web siteʼs or doctorʼs reputationand the siteʼs security and password protection, while very few cite HIPAA or the siteʼs privacy policy. 4
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyWhile the product is rumored to be on its last legs, Google Health represents a particularly interesting entrantinto the nascent PHR market. The search giantʼs PHR offering is richly and dynamically interactive. Accordingto its FAQ page, Google Health “can store wellness data, medical records, or both in Google Health includingpersonalized wellness goals around weight or exercise as an example, or more traditional medical history suchas your medications, allergies, procedures, immunizations, conditions, health insurance information and testresults. You can enter any of this information on your own, or you may be able to import your medicalinformation from a list of Google Health integrated partners such as hospitals, retail pharmacies orlaboratories.”Google Health will also show personalized search results according to the medical conditions, medications,and lab results listed in usersʼ Google Health profiles. While this function may be convenient and valuable tousers, it also raises concerns as to how Google will store or use the data it is gathering. Google has a strictprivacy policy with user data. For example, it does not save personal data to inform customized searches.However, users should be aware that Google is not legally blocked from sharing user data with employers andinsurers. The Google Health Terms of Service state: “Google is not a covered entity under the HealthInsurance Portability and Accountability Act of 1996 and the regulations promulgated thereunder (HIPAA). Asa result, HIPAA does not apply to the transmission of health information by Google to any third party.”Google does not charge fees to users of Google Health and does not show advertising on it. Google alsopledges not to sell health data or share it with employers and health insurance providers. However, users maybe forgiven if theyre skeptical about Google contining to provide this service for free indefinitely with no effortto extract financial gain from it. Users must trust that Google will not misuse their confidential information,willfully or accidentally. This trust must also extend to Googleʼs employees and contractors.Google has a number of major competitors in the PHR space. Microsoft HealthVault offers similar functionality,though without the integration with online searches [http://www.healthvault.com/]. The Norwegian companyWorld Medical Center offers another similar product, the World Medical Card. Dossia is an open-source PHRservice jointly operated by a group of major employers: AT&T, Applied Materials, BP America, Cardinal Health,Intel, Pitney Bowes, Sanofi-Aventis, Walmart, Abraxis BioScience, and Vanguard Health Systems. 5
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information and PrivacyFacebook and HealthFacebook is the largest and most used social media platform in the world, and one of the most used web-sitesoverall. Since its launch in 2004, Facebook has gained more than 600 million users, with millions more joiningdaily. A January 2009 Compete study listed Facebook as the most used social network by global monthlyactive users, with MySpace in second place. According to a Quantcast estimate in October 2010, Facebookhad 135.1 million unique U.S. visitors a month. Social Media Today estimates that as of April 2010, 41.6% ofthe U.S. population had a Facebook account. Facebook is also the number-one most visited site in Mexico,Indonesia, Turkey, Argentina, Malaysia and other countries.Facebook has heavily impacted every sector of the Internet, and the healthcare field is no exception. Forexample, in 2010, the Centers for Disease Control and Prevention reported that Facebook drove more than100,000 visits to the agencyʼs Web properties between January and June. In addition, the agencyʼs Facebookpage generated more than 75,000 “Likes” as of late January 2011.Interactions between Physicians, Providers, Scientists and Patients on FacebookPhysicians have long maintained blogs and social media presences as ways of sharing and interpreting healthnews and general advice, and the practice is no longer remarkable. However, physiciansʼ use of two-wayplatforms like Facebook is significantly more fraught with potential controversy.In December 2010, the Journal of Medical Ethics published an article entitled “Facebook activity of residentsand fellows and its impact on the doctor patient relationship.” In a survey of 202 physicians, 73% had aFacebook profile. Of these physicians, 99% displayed their real name on their profile, 91% showed a personalphotograph, 59% listed their university affiliation, and 55% their current position. No physicians in the studyautomatically accepted friend requests from patients, 15% decline friend requests on a case-by-case basis and85% decline all patients friend requests.Bryan Vartabedian, MD, a pediatrician at Texas Childrenʼs Hospital, is a prominent physician blogger. In anarticle in Infectious Disease News, Dr. Vartabedian reported that patients attempt to contact him for medicaladvice via his social media presence about once a month. 6
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyDr. Vartabedian does not encourage this type of contact: “Physicians should not be having direct dialogue withpatients in public places, even if it is the patient who initiates the dialogue.” Dr. Vartabedian further advises thatphysicians not mention specific patients by name online, and should generally go above and beyond HIPAAguidelines: “If I see a patient with a rare disorder, technically I could discuss the case on Twitter withoutmentioning the patientʼs name. It may be HIPAA compliant, but ethically, if the mother of my patient saw that Ihad written about it in a public platform, how would she feel? I think it represents a serious breach in therelationship we share.”The Communications and Public Outreach branch of the Canadian Institutes of Health Research (CIHR) usessocial media to interact with Canadians about health research initiatives. One successful CIHR program, CaféScientifique, facilitates interactive dialogue between various experts in health-research topics and the generalpublic. The meetings take place in a café, pub, or restaurant; interested people who are unable to physicallyattend may participate via the Café Scientifique Facebook community, which has 40,000 fans.Health Communities on FacebookWhile physicians and health providers may be constrained in their use of social media, patients have shown agreater willingness to form online communities in order to share stories and information. Participants in suchcommunities seek emotional support, practical advice for day-to-day coping, and recommendations foreveryday remedies.In a study conducted by CVS Caremark, researchers examined the 15 largest Facebook communitiesdedicated to diabetes. These communities averaged 9,289 members. The study examined 690 wall postingsfrom 480 unique users. Most of the postings were by people sharing personal stories. Among the studyʼsfindings: • 66% of posts described personal experiences living with diabetes • 24% included information unlikely to be shared with a doctor, such as alcohol and carbohydrate management • 29% were intended to show emotional support • 13% provided specific responses to information requests 7
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyWho Shares Health Information on Facebook?In spite of Facebooks widespread adoption, relatively few Americans are using social networks to gather orshare health information. Data published in 2009 by the Pew Internet and American Life Project indicates that: • 22% of social network users have followed their friendsʼ personal health experiences or updates • 15% have posted comments, queries, or information about health or medical matters • 12% have gathered any useful health information from the sites • 6% have started or joined a health-related group on a social networking siteIn 2011, Pew updated its 2009 research (cited above) and found that only 15% of social network users go tothese sites to find health information. The 2009 report revealed no significant differences among demographicgroups in their health-related usage of social networks. This holds true across gender, education level, andrace.A 2010 Pew report indicates that only 25% of Internet users living with a chronic disease said they use a socialnetworking site like Facebook to gather or share health-related information. Of those: • One in four has followed friendsʼ personal health experiences or updates on these sites • One in five has posted comments, queries, or information about health or medical matters • One in five has gathered any health information from these sites • One in ten has started or joined a health-related group on a social networking sitePage 9 and 10 show two examples of public status updates providing detailed information about users health.Figure 1 (on page 9) shows a profile belonging to Tammy Archer. From her profile, we can determine that sheis married with three children, one grandson, and three pets. She is dealing with a two-year-old diagnosis ofpseudotumor cerebri, a condition in which abnormal fluid builds and causes pressure in the skull, resulting inpainful headaches and loss of vision.In Figure 2 (on page 10) Sandra Gil-Brito is seeking advice from her Facebook community regarding a plateletdisorder. The comments below her status update include well wishes and recommendations that she visit anaturopath and eat peanuts with the shells. Based on a userʼs privacy settings, Facebook status updates likethese may be visible to any member of the public. 8
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 1: Tammy Archers Facebook Profile 9
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 2: Sandra Gil-Britos Facebook Profile 10
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyFacebook as LifesaverIn a December 2010 article, Dr. Kamal Thapar, a neurosurgeon at Sacred Heart Hospital in Wisconsin, andNewt Gingrich, former speaker of the House of Representatives and founder of the Center for HealthTransformation, described how doctors solved a life-or-death mystery by reviewing and analyzing a comatosepatientʼs Facebook commentaries about her symptoms.The 56-year-old woman had been hospitalized several times over the course of a few weeks, but doctors werestymied about the cause of her problem. She had complained of chest discomfort, but tests did not identify aproblem before she lapsed into a coma. Subsequently, doctors realized that the coma and accompanyingparalysis resulted from a massive stroke, with indications of prior strokes. The woman lived a considerabledistance from family members, and there was no complete medical history to consult. A hospital staff membercontacted a relative, but he could provide very little information, except that she had a Facebook account. Thepatientʼs Facebook profile detailed her medical history for several months: she had posted the medicationstaken, symptoms, hospitalizations and conditions preceding admissions, dates, times, and descriptions of whatshe felt and how her body reacted. Through her commentary, the Sacred Heart medical team determined thatthe patient had a hole in her heart, and that resultant blood clots to the brain had caused the strokes. Thisdiscovery enabled the doctors to construct a treatment plan, including surgery that saved her life.It is stories such as these that underline the promise of Facebook and similar sites to benefit their usersʼhealth. However, many users may find that the risk of sharing such detailed health data may outweigh thebenefits. While physicians can see this data, so can the usersʼ friends, family, employers, insurance company,and untold numbers of outside data-gathering entities and marketing firms.Obstacles to the Use of Online Health ResourcesAn analysis of diabetes sites by the Childrens Hospital Boston informatics program published in January 2011indicates that many websites lack scientific accuracy and put users personal information at risk. This studyneatly encapsulates the major objections that some health providers and experts have regarding thetrustworthiness of online health resources. 11
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyThe study found that only 50% of sites presented content consistent with diabetes science and clinicalpractice. Furthermore, the sites lacked proper privacy protection and review processes, and showedinappropriate advertising. Four moderated sites gave information about a nonexistent diabetes cure, and threesites showed advertisements for unfounded cures. Data security and encryption were largely absent, and onlythree sites gave members control over their personal information. The sites were found to lack basic andessential facts about diabetes and did not consistently include disclaimers recommending visitors seek theopinion of a physician. The study recommended increased moderation and transparency, particularly regardingpotential conflicts of interest, like ties to the pharmaceutical industry.The CVS study of diabetes communities on Facebook (referenced on page 7) cites inaccurate or willfullymisleading content. The study found that 27 percent of posts were promoting non-FDA-approved products,sometimes with personal testimonials. Troyen A. Brennan, MD, MPH, executive vice president and chiefmedical officer of CVS Caremark states, “This study shows the many ways that patients are benefitting fromsocial networks. But it is critically important for patients to understand the need for fact-checking.”Internet Privacy IssuesWhile inaccuracy and fraud are inherent dangers in any discussion or publication of medical information, theInternet poses particular risks of its own concerning privacy, risks that create the most major obstacle to thediscussion of health online. Even the youngest Internet users who are generally inclined to reveal largeamounts of personal information online express reluctance to discussing medical issues. According to aresearch project by the UK Royal Academy of Engineering, while the 14-to 19-year-old age group is generallyvery comfortable with social networking and with the contemporary culture of posting personal information onFacebook and similar sites, they are at least as aware as their elders of the potential for personal details tobecome subject to abuse or unauthorized uses.Respondents expressed particular concern over the use of Electronic Patient Records (EPRs), including thepotential for user errors or possible misuse of information that might cause discrimination or prejudice ifimproperly disclosed. Conversely, respondents did not consider general social interaction threatening onFacebook or similar sites; they felt they could maintain control over exactly what information was posted andwho could gain access to it. 12
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyWeb TrackingInternet search firms and markets have been tracking Web usersʼ browsing history ever since the Web becamea serious commercial entity. Historically, this tracking has been anonymous. Any website administrator cancount the number of a clicks a page receives, which sites and search terms direct traffic to them, and whichcountries visitors are located in. Recently, however, tracking has become more significant and fine-tuned.Modern Web browsers store “cookies,” strings of code that relay web browsing activity to companies likeGoogle. Such data is immensely valuable to marketers since it helps them target their campaigns toconsumers interests as reflected by their Web activity.In recent years, Internet marketers have shown a stronger interest in creating profiles of specifically identifiableconsumers, rather than simply aggregating anonymous data. Such profiles enable much more narrowlyfocused advertising informed by consumers posts and other activity on social media sites, as well as those oftheir friends. A profile may contain a personʼs name, street and email addresses, telephone number(s), age,gender, vocation, employer, hobbies, activities, memberships, affiliations, and/or medical considerations.Insurers Use Social Networking Sites to Identify Risky ClientsOne of the major risks for people who share information about their health online is that insurers will use thatinformation as a basis to deny coverage. The insurance industry has a strong financial incentive to researchapplicantsʼ online posts; Web searches are much less expensive than blood and urine tests and other medicalevaluations. The same data-gathering companies that presently serve direct marketers are becoming attractiveto insurers as well. Most consumers are unaware of how much of their Web browsing activity is available tothese companies. For example, Internet security expert James Brown has expressed concern that visitors toBritainʼs National Health Service website can be tracked and identified via Google and Facebook.Web ScrapingIndividual Web browsing history is not the only data of interest to marketers and insurers. Posts on Webforums, discussion groups, and bulletin boards are also a rich sources of data that can be easily tied to aspecific identity. While most online forums offer some measure of security or anonymity, these measures canbe easily circumvented using Web scraping techniques. 13
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyWeb scraping is a method of automatically extracting data from web sites en masse. It is related to themethods used by search engines to index Web pages.A site wishing to maintain the privacy of its users can include code in the pages requesting that they not bescraped, and reputable firms will honor those requests. However, not all firms are reputable. The law is unclearas to whether or not Web scraping constitutes a theft of information from the scraped sites. Even where lawprovides unambiguous protection from scraping, it may be difficult or impossible to enforce. Since scrapersemploy the same protocols as ordinary Web browsers, techniques that would completely prevent scrapingwould also block legitimate site visitors. Site programmers can add security measures like CAPTCHAS to limitvisits to human users, but the most sophisticated scraping software can sometimes circumvent thesemeasures.In 2010, The Wall Street Journal detailed a scraping incident that occurred on the health social networkPatientsLikeMe. On May 7, 2010, site administrators noticed suspicious activity on its discussion boarddedicated to mood disorders. The board was scraped by Nielsen Co., a media research firm whose clientsinclude several drug makers. Site user Bilal Ahmed used a pseudonym on the message boards to reach out tofellow depression sufferers, but his profile linked to his blog, which identifies him by his real name. WhenPatientsLikeMe announced the scraping incident, Ahmed deleted his posts and information about themedications he takes. However, there is no guarantee that his information has been completely removed fromNielsenʼs database, much to his chagrin. While some firms allow people to remove information aboutthemselves, there is no law requiring them to do so. Nielsen has announced that it no longer plans to scrapeanonymous health forums, but this pledge will be little comfort to Ahmed and others whose privacy havealready been compromised. The pledge also has no bearing on Nielsenʼs competitors.PatientsLikeMe sells data about its users, though the company says that this data is anonymized. As BilalAhmedʼs story suggests, however, the use of a pseudonym is no guarantee of anonymity online. A firm calledPeekYou LLC is seeking a patent for a method that matches handles on blogs, forums, and social media sitesto real names. PeekYou offers access to its records of about 250 million people in North America. As withPatientsLikeMe, PeekYou says that it anonymizes the data it sells, but individuals listed in the data are at themercy of the companyʼs intentions. 14
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyFacebookʼs Privacy IssuesFor groups concerned about Internet privacy and data security, Facebook poses particularly serious issues. A2010 study by Sophos asked technical personnel at large firms which social networks pose the biggest Internetsecurity risk. Sixty percent of respondents cited Facebook, much more than cited such sites as MySpace,Twitter, and LinkedIn.Facebook has been criticized for changing its privacy rules to expose more of a users information by default,requiring users to actively change their own settings to be more restrictive. Facebook has also been found totransmit the ID numbers of usersʼ profiles to advertisers when users clicked on some ads, though Facebookhas since discontinued this practice. Given this history, users should feel justified in having grave doubts aboutthe privacy of personal information they share on the site, even if that data is explicitly marked private.Facebook users may not be aware of how accessible their posts are to insurers, employers, and marketers,and may not consider the possible consequences of their posts. In November 2009, Natalie Blanchard lost herhealth benefits due to photos she posted on Facebook. The 29-year-old woman was on leave from her job atIBM due to extreme depression for over a year and a half. Her insurer, Manulife, refused to continue providinghealth coverage for her after an investigation into her claims revealed Facebook photos of her on a beachvacation, at a bar with friends, and at her birthday party. On the basis of these photos, Manulife determinedthat Blanchard was no longer depressed, costing her thousands of dollars in uncovered claims.Facebookʼs Changing Privacy PoliciesSince its founding, Facebook has progressively changed its terms of service to make more information publicby default. The clear tendency has been for Facebook to unilaterally change its default settings for maximumpublic access, placing the onus on users to manually change their settings to make them more private. InDecember 2009, the company made status updates and lists of friends and interests public by default not justto fellow Facebook users, but to anyone. These changes can most clearly be understood by viewing thisinteractive infographic by Matt McKeon: http://mattmckeon.com/facebook-privacy/ 15
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyFacebook has defended the changes to its policies by citing evolving norms around general privacy in theInternet age. The company points out that most users are on the site specifically in order to invade the privacyof fellow users. Indeed, users routinely request feature modifications that give them greater access to otherusersʼ information. For example, Facebook users have asked that profiles of strangers be made more public sothey can determine if someone is a former classmate. While users want this information about themselves tobe private, they want it to be public for everyone else.Public awareness of Facebookʼs privacy issues reached a peak with the publication of a Time Magazine articleentitled “How Facebook Is Redefining Privacy” published in May 2010. The article observes that Facebookusersʼ activity is a highly rich source of marketing data: “The more updates Facebook gets you to share andthe more preferences it entreats you to make public, the more data its able to pool for advertisers. Googlespearheaded targeted advertisements, but it knows what youre interested in only on the basis of what youquery in its search engine and, if you have a Gmail account, what topics youre e-mailing about. Facebook isamassing a much more well-rounded picture. And having those Like buttons clicked 100 million times a daygives the company 100 million more data points to package and sell.”Facebookʼs privacy settings are highly complex, as is the policy governing those settings. The New York Timesreports that to customize your settings, it is necessary to click through more than 50 privacy buttons, requiringthe user to choose from among a total of more than 170 options. Facebookʼs privacy policy is 5,830 words longand its privacy-related FAQ adds up to more than 45,000 words.Facebook Reveals User IDs to AdvertisersBen Edelman reported that clicking an ad in Facebook transmits the userʼs identity to the advertiser. Theadvertiser then has access to nearly all of the userʼs Facebook activity and posting, including status updates,photos and a list of his or her friends. In a post on an online forum, Facebook employee Steven Grimmexplained that this identity transmission was inadvertent and not a policy of the company. If Facebook wantedto profit from identifying users to advertisers, Grimm argues, it would do so more transparently and reliably.Nonetheless, whether or not Facebook intends to reveal usersʼ identities, the fact that it is so easy to extractthis information from usersʼ normal browsing should give pause to those concerned about privacy. 16
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyIdentity Leaks in Facebook AppsFacebook applications, or apps, are widely used third-party extensions to the siteʼs basic functionality. Appsenable users to play games, create family trees, discover former classmates, and shop. The companyestimates that 70% of users use an app in a given month. Apps are crucial to Facebookʼs business modelsince they often feature virtual goods for sale.The Wall Street Journal reported that many popular apps, were transmitting usersʼ names and the names oftheir friends to advertising and Internet-tracking companies without usersʼ knowledge. This sharing ofinformation was not prevented by Facebookʼs strictest privacy settings. “The Journal found that all of the 10most popular apps on Facebook were transmitting users IDs to outside companies. The apps, ranked byresearch company Inside Network Inc. (based on monthly users), include Zynga Game Network Inc.sFarmVille, with 59 million users, and Texas HoldEm Poker and FrontierVille. Three of the top 10 apps, includingFarmVille, also have been transmitting personal information about a users friends to outside companies …The information being transmitted is one of Facebooks basic building blocks: the unique Facebook ID numberassigned to every user on the site. Since a Facebook user ID is a public part of any Facebook profile, anyonecan use an ID number to look up a persons name, using a standard Web browser, even if that person has setall of his or her Facebook information to be private.”The sharing of this data violated Facebookʼs own rules, and those of the most of the app makers as well.Nevertheless, if Facebook and the app makers are unable to enforce their rules, it raises questions about themore than 550,000 third-party apps available overall. It is difficult to imagine that Facebook could prevent dataleaks from all of these apps even with the best intentions. Furthermore, even if a given user has no appsinstalled, their app-using friends may inadvertently transmit their ID anyway.Privacy and the Facebook “Like” ButtonFacebook users are able to “Like” one anotherʼs posts. These Likes appear in usersʼ activity streams and ontheir profiles. In April 2010, Facebook introduced its Open Graph initiative, which enables any web site todisplay a Facebook “Like button”. Within a month after Open Graphs rollout, more than 100,000 sites hadincluded a Facebook Like button, and this functionality is steadily becoming a ubiquitous presence across theweb. The button shows the number of Facebook users who have clicked it, including the number of the usersʼown friends. Facebook is able to perform this function by storing a userʼs credentials in the browser. 17
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyThe Like button code checks the stored credentials, identifies the user, and adjusts its display accordingly. Aswith any of the personal activity recorded by Facebook, users run the risk of this data being sold or misused,intentionally or not. According to Internet security expert James Brown, it is not necessary for a user to actuallybe logged in to Facebook for a site with a Like button to communicate his or her identity. Brown gives theexample of Britainʼs National Health Service website. If a Facebook user visits the NHS site, the fact of the visitis communicated back to Facebook so that the NHSʼ Like button can display properly.Facebook, Health Information, and Privacy: The Path of the Blue Eye Projects ResearchOur research indicates that peoples reluctance to discuss health matters on Facebook is largely due toconcerns over privacy. Figure 3 on page 19 illustrates data generated in a digital media monitoring programproduced by Sysomos and includes information from blogs, traditional media, and forums. The blue line on thegraph shows the number of online conversations mentioning “Facebook” and “privacy” within four words of oneanother. The red line shows English-language online conversations mentioning “Facebook,” “privacy” and“health” within four words of each other.The graph indicates that concerns regarding Facebook privacy-related issues has grown over the past year-especially after a Time Magazine article appeared regarding Facebooks privacy issues in May 2010. However,conversation about privacy, Facebook, and health did not gain intensity during this period.Our Research: Health Information Sharing Is Not Happening on FacebookIn October 2010, the Path of the Blue Eye Project commissioned a research study of 1,000 Americans ofdiverse backgrounds about their patterns of Facebook use and sharing. This survey was conducted byWakefield Research, a leading market research firm and has a margin of error of +/- 3%. Overall, this studyindicates that while Facebook use is extremely common, most people are unwilling to share health informationon the social network. Following are some of the most important results of this research:Overall Facebook UsageEighty percent of our respondents reported having used Facebook. The likelihood of a respondent neverhaving used Facebook at all rather predictably trends upwards with age (see Figure 4 page 20). 18
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 3: Trend Data - Facebook, Health, and Privacy Conversations on Blogs, Forums, and Other Social Media 19
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 4: Never Used Facebook, by Age 20
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyOnly Some Are Willing to ShareOnly 17% of respondents reported having used Facebook to share personal health or medical information, suchas uploading photos/X-rays or posting status updates about illnesses, medications, doctor visits or other topics.Twelve percent of respondents answered: “Yes, and I would share this information on Facebook again.” Withinthis group, there was significant variation by age. Younger respondents were much more willing to share thanolder respondents, which reflects their generally greater openness in online settings (see Figure 5 on page 22).There was also some variation among racial groups, with whites less likely to report sharing than Hispanic andblack respondents (see Figure 6 on page 23). In addition, religious believers are more than twice as likely toshare than non-believers (see Figure 7 on page 24).In addition, 54% of respondents answered: “No, and I WILL NEVER share health information on Facebook.”Women were more likely to respond this way (see Figure 8 on page 25). The percentage of respondentsunwilling to share share health content on Facebook trended generally upwards with the increasing age of therespondents (see Figure 9 on page 26).When asked whether they would ever share health information on Facebook, there was not much variationamong the answers from different racial or income groups. Interestingly, however, 24% of repondents with lessthan a high school diploma will never share, whereas the percentage for other education levels are all within the52-56% range. This is somewhat surprising, because a relatively large percentage of this demographic alsosaid that they would share health information on Facebook.Reasons for Not Sharing68% of Facebook users (54% of U.S. adults) declared that they had not and would not share their personalhealth information on Facebook. Among non-sharing Facebook users, the reasons given include: • 86%: “Itʼs no oneʼs business but my own.” • 39%: “Iʼm afraid strangers would find my health information.” • 32%: “My health information could be used by marketers.” • 17%: “Itʼs embarrassing.” • 11%: “Iʼm concerned my insurance provider would find it.” • 9%: “It could negatively affect my job.” 21
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 5: Willingness to Share Health Information on Facebook, by Age 22
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 6: Willingness to Share Health Information on Facebook, by Race 23
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 7: Willingness to Share Health Information on Facebook, by Religiosity 24
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 8: Unwillingness to Share Health Information on Facebook, by Gender 25
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 9: Unwillingness to Share Health Information on Facebook, by Age 26
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyThe response “Itʼs no oneʼs business but my own” was by far the most significant reported consistently by 80%to 90% of non-sharing respondents across all demographic groups, including age, region, race, religion, sex,income, household size, and education.The answer “Im afraid strangers would find my health information” was also reported quite consistently acrossall non-sharing groups, ranging from 30% to 45% of all respondents. There was some variation in thisresponse geographically, with more concern in the Northeast and on the West coast than in the Midwest andthe South (see Figure 10 on page 28).There was also significant variation by education level, with higher-educated, non-sharing respondentssignificantly more likely to be concerned. The response “My health information could be used by marketers”accounted for 32% of the total. There was wide variation among age groups (see Figure 11 on page 29).There was also some variation among non-sharing racial groups, with whites being much more concernedabout marketers using heath content shared on Facebook than non-whites (see Figure 12 on page 30).Concern about marketing also increased steadily with education level (see Figure 13 on page 31).A quarter of non-sharing respondents replied “My Facebook friends wouldnʼt find it relevant or interesting."Respondents without children were more likely to feel this way. Respondents with older children were the leastconcerned about their Facebook friendsʼ reactions to their posting health information.The response “Itʼs embarrassing” only accounted for 17% of responses, perhaps because many of theprevious responses could be construed as implying embarrassment. The youngest non-sharing respondentswere likeliest to report embarrassment as their specific reason for not sharing (see Figure 14 on page 32).This is presumably because health issues become significantly more commonplac among older populations.As previously mentioned, surprisingly few respondents (11%) responded with: “Iʼm concerned my insuranceprovider would find it.” This is likely because few respondents are aware of the issue. There was littledemographic variation in this response.There was very significant racial variation in the response “It could negatively affect my job,” with non-sharingHispanics expressing the most concern over their employers finding health information they post on Facebook,versus respondents of other racial and ethnic groups (see Figure 15 on page 33). The response “It wouldnegatively affect my relationships” showed some age variation, with the largest percentage among theyoungest and oldest respondents (see Figure 16 on page 34). 27
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 10: Concern that Health Information Shared on Facebook Will Be Found By Strangers, by Geographic Region (Base: Non-health Content Sharers) 28
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 11: Concern that Health Information Shared on Facebook Will Be Used by Marketers, by Age (Base: Non-health Content Sharers) 29
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 12: Concern that Health Information Shared on Facebook Will Be Used by Marketers, by Race (Base: Non-health Content Sharers) 30
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 13: Concern that Health Information Shared on Facebook Will Be Found By Strangers, by Education (Base: Non-health Content Sharers) 31
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 14: Embarrassment Preventing Facebook Users from Sharing Information, by Age (Base: Non-health Content Sharers) 32
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 15: Fear that Employers Will Find Health Information Shared on Facebook, by Race (Base: Non-health Content Sharers) 33
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and Privacy Figure 16: Fear that Health Information Shared on Facebook Will Harm Relationships, by Age (Base: Non-health Content Sharers) 34
  • Report 3: Facebook & Health Privacy | June 2011 unNiche Widen Your Health Marketing Communications PerspectiveJust Between Us:Facebook, Health Information, and PrivacyConclusionIf the Web is to become a truly mainstream resource for health information, privacy concerns must beaddressed. While Facebookʼs sheer size and ubiquity gives it an advantage, our research indicates that it isnot likely to become a major destination for the discussion of health issues. Facebookʼs outspoken aim tomake personal information more public is directly at odds with the needs of online health information seekersand sharers. There is an opportunity to create an online community with robust privacy protections and abusiness model that does not create incentives to sell data. While no Internet security measures will ever beperfect, an outspoken and consistent commitment to privacy would go a long way toward assuaging theanxieties of online health searchers and sharers. 35