INFS 892: Health Informatics Research

Literature Review #2: Health Care Professionals’ Use of Online Social Networks

Cory Allen Heidelberger

March 25, 2011

 

In less than a decade, online social networks have become a prominent and powerful extension of social interactions throughout our culture. Through tools like blogs, Facebook, and Twitter, we keep in touch with friends, make new friends, do business, and gain new knowledge.

Health care professionals do not exist in isolation from online social networks. These new online tools offer the same social, informational, and professional benefits to doctors, nurses, and pharmacists as they do to executives, students, merchants, and retirees. Since so much of health care relies on effective and professional communication among health care professionals and between them and their patients, a communication tool like online social networks has significant potential to affect the effective delivery of health care. Preliminary to studying how the use of online social networks may affect the practice and outcomes of health care, it is important to understand how and how much health care professionals are adopting and using online social networks to support their professional practice. Given the sensitive, high-stakes nature of health care, it is also important to understand the ethical dimensions of online social network use among health care professionals.

 

Online Social Networks: Defining the Field

The “backbone” of online social networks is the connected collection of user profiles (Boyd & Ellison, 2008). Such profiles usually include user names, photos, and basic demographic information. Online social networks generally include information about connections between members. That information may reside in explicitly declared links, like unidirectional “Like” or “Follower” links or bidirectional “Friend” links (Boyd & Ellison, 2008). Health care providers may interact with patients and with each other on any established online social networking site. Health care providers may turn to health social networks specializing in health issues. They may focus their online activity even more narrowly in online social networks like Sermo.com, membership to which is open exclusively to physicians.

Inquiry into health care provider use of online social networks need not be confined to platforms like Facebook or Sermo. While such platforms dedicated to social networking create an easy point of entry, standardized format, and accessible audience for most casual Internet users, some health care professionals may create their own online social networks through their own blogs, wikis, and other social media. For example, several nurses may create independent blogs but over time find each other’s websites. They may include each other on their blogrolls, comment on each other’s blogs, and write blog posts responding to items they read on each other’s blogs. This nurse “blogosphere” may exist on several different platforms (Blogger, Tumblr, WordPress, etc.), have no formal leadership or organization, follow no business model, and offer no standardized format or features, but it would still constitute an online social network. Its “backbone” of user profiles may be much less well defined than the profile/friend structure of platforms like Facebook, but a blogosphere still offers a clearly definable network of social interactions supported by online technology.

 

Professional–Patient Use

Patients are turning increasingly toward the Internet for health information (Fox & Jones, 2009). No longer the “sole custodian[s] of medical data” (Eysenbach, 2008), health care professionals are increasingly “one of many input sources” (Swan, 2009). Some health care providers are responding to this shift in patient demand: as of January 2011, 906 U.S. hospitals (less than 20% of all U.S. hospitals) had established 3,087 social networking sites (Bennett, 2011). 170 Canadian hospitals (12% of total) have been found to be using social media (Fuller, 2011). Social media adoption rates among European hospitals vary, with around 45% of Norwegian and Swedish hospitals using LinkedIn, but 22% hospital adoption of Facebook in Norway compared to 0% in Sweden. The percentage of German hospitals using online social networks is in the single digits, while adoption in the United Kingdom ranges from 16% for Facebook, 21% for Twitter, and 41% for LinkedIn (Engelen, 2011). Australia’s hospitals are lagging 12 to 18 months behind the U.S. in social media adoption (Cadogan, 2011).

Medical schools are also catching up with adoption of the Web and social networking sites. As of March 31, 2010, 100% of U.S. medical schools had websites. 95% of U.S. medical schools had some sort of Facebook presence: a quarter had official school pages, over 70% had student groups, and more than half had alumni groups on the social networking site. Just over 10% had Twitter accounts (Kind, Genrich, Sodhi, & K. C. Chretien, 2010).

Creating a social media presence does not mean hospitals and other institutions are using them effectively to promote interaction with patients. A marketing study of 120 American hospitals selected at random found all had Facebook pages, but less than 40% posted content to those pages daily, 25% posted twice a week, 25% posted once a month, and 5% had posted nothing (Dolan, 2011). Any discussion of health care providers’ use of online social networks requires remaining mindful that effective use of online social networks requires being social—i.e., being present, producing content, and interacting, not just creating a static electronic brochure.

Patients are seeking information to supplement, not replace, the advice of health care professionals. Overwhelming majorities say professional sources are more helpful in providing accurate medical diagnoses and information about prescription drugs; strong majorities also favor professional sources for information about alternative treatments and recommendations for doctors, specialists, or medical facilities (Fox, 2011). Smaller majorities prefer non-professional sources for emotional support and quick remedies to everyday health issues (Fox, 2011). This split suggests that patients may be receptive to informational support from health care professionals in online social networks but that professionals may want to extend their professional emotional reserve to the online realm and leave laypeople the room they value to provide each other emotional support.

Health care professionals have been able to enter patient health social networks to recruit participants for medical trials. As part of its multi-platform social media strategy during the 2009 H1N1 outbreak the CDC monitored and responded to social network conversations to provide the public with accurate disease and treatment information (Keckley & Hoffman, 2010).

While engaging patients in the online forums they are adopting has the capacity to build effective provider-patient relationships, the health care industry lags in adoption of social media in part due to lack of a clear business model. Online social network activities require time and effort; compensating the physician and the facility for such engagement, from information systems development and maintenance to the actual medical information shared by practitioners, is complicated. Charging patients by the Tweet is problematic in a realm where users are accustomed to free-flowing, unmetered exchanges. Advertising is restricted by professional guidelines and regulations (Keckley & Hoffman, 2010), thus hindering another possible revenue source to make social media efforts pay for themselves.

Health care professionals may find support for an online social-networking business case in the marketing potential of such online tools. Online social networks offer health care professionals the ability to disseminate information quickly, broadly, and at almost no cost. They allow providers to cheaply advertise health-related seminars and community activities. From a pure marketing standpoint, using online social networks to interact with patients sends a message to return and potential “customers” that the providers and their hospital or clinic are cutting edge businesses (Tariman, 2010). Engaging in social media may also be “essential” for institutions and practitioners to combat misinformation that patients and others will spread via those same channels (Pho, 2011a). High-quality physician blogs like KevinMD humanize the healthcare industry as a whole, giving physicians’ perspectives and offering popularly accessible explanations of medical decisions (Bhargava, 2009).

 

Professional–Professional Use

Health care professionals can also use online social networking to obtain information and other support for themselves. Professionals are using these online resources, especially younger professionals (Guseh, R. W. Brendel, & D. H. Brendel, 2009). Roughly one in six U.S. physicians have created accounts on Sermo.com (Bureau of Labor Statistics, 2009; “Introduction | Sermo.com,” 2011). Ozmosis and SocialMD offer similar “walled (and safe) communities for physicians to share opinions and interact in a guarded environment” (Bhargava, 2009). 65% of nurses say they plan to use online social networks for professional purposes (Keckley & Hoffman, 2010).

Health care professionals, like professionals in other fields, have found blogs useful as public document repositories, discussion space, and opportunities to expand professional networks and knowledge base (Thielst, 2007). Such blogs become part of the literature and public face of the profession, informing and reflecting on the medical community as a whole (Lagu, Kaufman, Asch, & Armstrong, 2008). Less public, members-only social networks for physicians may support more valuable sharing of specific medical knowledge and support. Professional online social networks Sermo, Ozmosis, and radRounds allow members to share cases for community discussion and collaboration (Keckley & Hoffman, 2010).

 

Ethical Issues

Doctor-patient interaction online remains relatively rare. Only 5% of adults report receiving information, care, or support from health professionals online (Fox, 2011), a number no higher than the number of adults who reported exchanging e-mails with their doctors in 2008 (Cohen, 2009). Such interaction is stymied not by an absence of health care professionals in online social networks but by ethical concerns. In 2009, 60% of U.S. physicians said they were already using online social networks or were interested in doing so (Darves, 2010). A survey of medical residents and fellows at one French facility in fall 2009 found 73% of respondents had Facebook profiles, with 99% of those including the user’s real name, 97% including birthdates, and 91% including a personal photo. 85% of responding medical professionals said they would automatically decline “friend” requests from patients, and 76% expressed concern that a patient discovering a physician’s Facebook account and gaining access to the content would affect the doctor-patient relationship (Moubarak, Guiot, Y. Benhamou, A. Benhamou, & Hariri, 2011). Another study found more than 80% of University of Florida medical students and residents included personally identifiable information in their Facebook accounts, and only 33% of those users imposed privacy protections on that information (Thompson et al., 2008).

A fundamental tension exists between establishing appropriate boundaries (Luo, 2009) and promoting education and empowerment, a problem addressed by developing “a more sophisticated awareness of privacy and engagement within online communities” (Lewis, Goldman, Bennett, Shine Dyer, & Kolmes, 2011). That understanding of engagement may require simply applying the common sense of face-to-face workplace communication: treat the online social network as a public space at the hospital, and make the publicity explicit to patients who may share that space to give them a sense of what personal matters they should address offline (Giurleo, 2011a; Sydney, 2007). Such public prudence may not differ significantly from the professional ethics doctors have wrestled with in social situations for generations; however, the stakes of maintaining that professionalism are arguably higher in the online realm, where indiscretions can cause damage much more quickly across a much larger social network (Jain, 2009). Ethical professional use of social media also requires constant compassion, with a concerted awareness that the avatars and text with which professionals interact are still real people (Giurleo, 2011b), an awareness that may too easily be lost in online realms that convey less social presence.

Ethical demands may differ among different health care fields. For example, psychotherapists use transference, in which patients experience the psychotherapist in ways similar to their connections with people from their past, to help patients work through their problems. Psychotherapists avoid self-disclosure and maintain professional boundaries to avoid hindering that process. Self-disclosure via social networks may directly impact treatment (Luo, 2009). Because of the nature of their work, psychiatrists who engage in public activities on blogs or Facebook may draw unwelcome attention from emotionally unstable or dependent individuals (Perez-Garcia, 1998). Direct communication and the face-to-face process of narrating their own stories are part of treatment; accessing information about therapists online may short-circuit those processes (Yan, 2009).

On the other hand, psychiatrists may find uniquely valuable information about their patients’ thoughts, emotions, and relationships by using Web searches and social networking sites to incorporate Internet habits into their history-taking (Perez-Garcia, 2010). Health care providers may be able to use online information to verify patient information, especially in mental health situations where patients may be prone to falsehood (Luo, 2009). Acting on false information supplied by patients may lead health care providers to deliver incorrect or harmful treatments; however, online information may be just as prone to inaccuracy and requires active efforts at verification (Hughes, 2009). The APA Ethics Committee has ruled that using the Internet to gather information about a patient is ethical “only in the interests of promoting the patient’s care and well-being and never to satisfy the curiosity or other needs of the psychiatrist,” but another expert contends that Googling patients without their knowledge, even in the interest of providing care, violates patient autonomy and dignity (Yan, 2009).

The problem of unintended disclosure on online social networks may affect patients as well as providers. For example, a physician discovered via Facebook photos that a patient who had denied smoking was indeed a smoker (Guseh et al., 2009). Such unintended disclosure may provide the physician information that may affect recommended treatment; however, if included on medical records, that unintended disclosure could also cause the patient to face higher medical insurance premiums (Chin, 2010).

To avoid ethical pitfalls and harm to patient care, some professionals may also adopt the position that as social and recreational spaces, popular online social networks like Facebook are as inappropriate a space for professional–patient interaction as the local bar; such professionals may thus declare online social networks totally off limits (Darves, 2010; Tariman, 2010). Others recommend very cautious guidelines for online social network engagement, with a first principle of “friending” patients being don’t (Guseh et al., 2009). However, one may question whether health care providers restricting their online social network content to purely professional material will miss out on the social utility of such we tools and whether limiting disclosure on Facebook and personal blogs will make any meaningful contribution to professional privacy when vast amounts of information about health care professionals is already available on other sites outside of their control (Holm, 2009). While certain one-to-one interactions like “friending” on Facebook may complicate professional detachment, forthright engagement with the general public in health care provider blogs and other social networking tools may help put a human face on the industry and provide consumers with a better understanding of health care (Bhargava, 2009). Medicine and law are still catching up with technology, so to avoid running afoul of HIPAA and other rules, practitioners generally avoid blogging about patients, even though discussions of certain challenging cases could be greatly informative for the general public (Darves, 2010). Despite ethical complications—or perhaps because of them, practitioner blogs may be the most logical venue for discussion of ethical and practical guidelines for engaging patients and fellow professionals in social media settings to improve health care delivery. One might even argue that practitioners have a professional, ethical obligation to use the blogs and other social networking tools by which misinformation might spread to combat that misinformation by helping patients find reputable health data (Pho, 2011b).

Awareness of privacy issues online is not universal. A 2006 sampling of medical blog content found 33% providing first and last name of authors and 16% providing sufficient identifying information (Lagu et al., 2008). 16% included positive comments about patients; 18% included negative comments about patients. Blogging allows some popular health care professionals to disseminate good health information to the masses (Darves, 2010), but that same channel can carry incorrect and harmful information just as quickly. To avoid harm and personal liability, health care professionals engaging in blogging appear to be developing voluntary “self-regulation regarding patient privacy, transparency, anonymity, and patient respect” (Kruglyak, 2006; Lagu et al., 2008).

Such self-regulation appears to rise with experience and training: multiple investigations find younger medical students and recent medical school graduates frequently exhibiting unprofessional behavior in online social networks, although concerns in this area seem to arise as much from injudicious posting of their own personal information and evidence of behavior outside healthcare settings that might impinge on their and their schools’ or employers’ reputations as from actual improper healthcare practice or improper direct interaction with patients or other professionals (Cain, Scott, & Akers, 2009; K. C. Chretien, Greysen, J.-P. Chretien, & Kind, 2009; MacDonald, Sohn, & Ellis, 2010; Thompson et al., 2008). Institutions like Harvard Medical School and Drexel University College of Medicine already caution students about the potential unintended professional consequences of injudicious personal disclosures on social networking sites (Jain, 2009). However, as of March 31, 2010, while nearly 97% of U.S. medical schools had posted student guidelines on publicly available websites, only 10% had published conduct policies specific to social media (Kind et al., 2010). Given that prohibiting online social network use is unlikely to stop the widespread adoption and use of these tools by health care professionals, it seems more fruitful to follow to route recommended for using e-mail in health care: proactively defining boundaries, improving user knowledge, and developing practical guidelines centered around patient privacy and trust (Chin, 2010). A similar route in online social networking—developing training in privacy, identity protection, and e-professionalism (Mattingly, Cain, & Fink, 2010; Thompson et al., 2008)—seems a more mature route (van den Broek, 2010) that will trains medical students to develop the professionalism necessary to navigate difficult situations rather than simply avoiding them. Such an approach that addresses the challenges of professionalism online would then allow practitioners, professional organizations, and health care businesses to harness online social networks for advancement of the profession

 

Directions

Adoption of online social networks is unlikely to subside, especially as mobile tools accelerate the blurring of boundaries between online and offline social networks. That adoption process may be slower among health care professionals in their work than among other users in other professions, due to the sensitive and literally life-or-death nature of health care and the professional and ethical considerations that arise therefrom. The health care profession is moving more cautiously into this realm of electronic communication just as it has moved more cautiously from paper to electronic medical records. An inappropriate use of new tools in health care could cause enormous harm. But just as with electronic medical records, the appropriate use of online social networks to communicate with patients and fellow professionals could greatly improve the delivery of health care.

Understanding the current state of online social network use by health care professionals, we can proceed to investigating those potential improvements. Some evidence already exists that patients can find online interaction with doctors satisfactory (Cohen, 2009). Research should further investigate the capacity of online social networks to improve patient perceptions of health care and well-being. Similarly, it will be valuable to determine the satisfaction health care providers obtain in using such online tools, as well as potential professional and organizational benefits such as better workflow, cost savings, acquisition of expertise, and development of and engagement with professional organizations.

While more complicated to quantify, research should also investigate whether health care professionals’ engagement results in better health outcomes. Does advice given online affect the likelihood of patients adopting and sticking with prescribed health behaviors? Does online engagement increase patients’ likelihood to consult with physicians on subsequent health issues? Could online interaction lead to a reduction in face-to-face visits that might in turn lead to health care providers missing certain health indicators that would be obvious in a physical meeting? Answers to all of these question will be of keen interest to providers and patients alike.

Parallel to this course of health investigation should run a line of ethical investigation. As we investigate the impacts of online social networks on provider-patient relationships, we should engage providers and patients in conversations about their expectations of privacy and professionalism in the online realm. These conversations will help shape guidelines to maintain quality and propriety in the increasingly virtual doctor’s office. Such discussions and investigations of current use will also inform the necessary legal scholarship that will develop around online social networks so health care providers may better understand their liability for online communication. Answering these ethical questions alongside the practical questions of health outcomes and provider and patient satisfaction will support increasing appropriate use of online social networks in health care delivery.

 

Works Cited

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Text of presentation on prior research, delivered in INFS 892, 2011.03.03

Health information technology (HIT) research frequently cites privacy as a concern of health care providers and patients. Privacy is recognized internationally as critical factor in HIT adoption (Anderson, Forgner, Johns, & Reinhardt, 2006). Technological, social, organizational, and legal changes since the 1960s have contributed to steadily growing privacy concerns (Westin, 2003). However, the new technology of online social networks as applied to health—health social networks—poses new conditions and benefits that may change previous privacy concerns.

Health Social Networks

The “backbone” of online social networks is the connected collection of user profiles (Boyd & Ellison, 2008). Such profiles usually include user names, photos, and basic demographic information. On health social networks, these profiles may include medical information that would generally be kept private in traditional interactions with health professionals but which HSN users share to help each other find users with information and experience relevant to their specific health concerns. Online social networks generally include information about connections between members. That information may reside in explicitly declared links, like unidirectional “Like” or “Follower” links or bidirectional “Friend” links (Boyd & Ellison, 2008).

A health social network is an online social network formed around shared interest in a specific health condition like obesity or cancer, a specific area of health care like children’s medicine or hospice, or health information in general. The key characteristic of an online health social network is interaction focused on sharing knowledge and providing emotional support for individuals dealing with health-related questions and problems affecting themselves or other people they care about. Swan (2009) defines a health social network as “a website where consumers may be able to find health resources at a number of different levels.” Swan’s definition includes the word consumer, an increasingly inapt term (Adams, 2010a) (Heidelberger, 2009) given that an important characteristic of health social networks and any other type of online social network is that users are not merely consuming content but producing and organizing much of the content available in the form of, for example, posts, comments, discussions, and ratings. While Internet use is often characterized by “lurking,” the act of reading online discussions without making one’s presence known through participation, some evidence shows that health-related online groups show a markedly above-average level of user participation (Nonnecke & Preece, 2000). This increased participation and the blurring of producers and consumers into conducers affects how individuals configure their understandings of health (Adams, 2010b).

The value of any online social network lies in the sharing of information. In health social networks, one of the vital “different levels” (Swan, 2009) at which users seek information is peer information, advice from users just like them that relates specifically to their experience. Lurkers can find certain information relevant to their health situations without ever making their presence known, but to make the information on a health social network fully relevant to one’s specific health situation, a user generally must choose to engage the community in a conversation, share some personal detail, and surrender some level of privacy.

Privacy

Privacy is subject to different interpretations in different situations (Allen, 1988). Privacy is not simply the desire to withhold information; more comprehensively, privacy refers to the desire to control disclosure of information (Lanier & Saini, 2008). Privacy means controlling what personal information is revealed to others, when that information is revealed, and how it is used (Westin, 1967, 2003). The view of privacy as a matter of control enjoys broad acceptance (Elgesem, 1996; Fried, 1984; Lessig, 2002). However, some scholars argue that, while control plays an important part in managing privacy, having control does not equate with having privacy (Dinev & Hart, 2004; Laufer & Wolfe, 1977; Xu, 2007). Control may merely be a means to the privacy ends of restricted access and protection from intrusion (Tavani & Moor, 2001).

Westin (1967) identifies four states of privacy:

  1. solitude: freedom from observation by others
  2. intimacy: small-group seclusion in which members can achieve close, relaxed, frank relationship
  3. anonymity: freedom from identification and surveillance in public places and for public acts
  4. reserve: desire to limit disclosure to others (as summarized in Margulis, 2003).

Westin (1967) also identifies four main functions of privacy:

  1. personal autonomy
  2. emotional release
  3. self-evaluation
  4. limited and protected communication

Some scholars narrow the concept of privacy to informational privacy to focus on the ability of individuals to limit the access others have to their information (Alpert, 2003). In developing the “Concern for Information Privacy” construct, (Smith, Milberg, & Burke, 1996) identify four main components: collection, errors, unauthorized access, and secondary use. (Stewart & Segars, 2002) validated and extended the CFIP instrument. CFIP focuses on organizational handling and uses of information. However, the Internet creates important changes in how individuals interact with organizations and with each other with respect to personal information. The Internet gives consumers more access to and control over the data they share in the marketplace (Malhotra, Kim, & J. Agarwal, 2004). Grounded in social contract theory, the construct of Internet users’ information privacy concerns (IUIPC) focuses on consumers’ engagement with e-commerce and consists of three main components:

  1. collection: equitable exchange of information according to mutually accepted rules
  2. control: freedom to voice an opinion or exit the contractual agreement
  3. awareness of privacy practices: understanding of the rules and practices established by the firm and its agreement with consumers (Malhotra et al., 2004).

Subsequent research has used social contract theory similarly to understand patient interaction with medical websites (Gaurav Bansal, Zahedi, & Gefen, 2010).

The National Consumer Health Privacy Survey 2005 (Bishop, Holmes, & Kelley, 2005) provides these key findings about user interaction

  1. Consumers are concerned about health information privacy.
  2. Consumers are unaware of their privacy rights.
  3. A small fraction (13%) of consumers engage in specific privacy-protection behavior. Most cited behaviors have to do with keeping insurers from finding out information that might affect payment or premiums.
  4. Consumers are willing to trade privacy for benefits. Note that at this time, more consumers identified paper records as secure than identified electronic records as secure.

Privacy in Health Social Networks

More recent research suggests that privacy concerns are affected by health status: individuals in poor health are less likely to share information with consumer health websites (G. Bansal & Davenport, 2010). Connected research attempts to link privacy concerns with other personal dispositions: emotional instability may work through perceived sensitivity of health information to relate to heightened privacy concerns, but extroversion, agreeableness, conscientiousness, and intellect show little sign of significant connection to privacy concerns (Gaurav Bansal et al., 2010). Notice that the preceding studies, like many discussions of information privacy, address privacy as a consumer issue. Westin (2003) broadens the discussion of privacy to look at individual privacy concerns in the context of their relationships as citizens to government and as employees to employers in addition to the commercial relationship of consumers to business. The IUIPC focuses on the social-contract relationship between individuals and the firm as each entity surrenders different rights and makes different promises for different benefits (Malhotra et al., 2004). These conceptualizations fit with the theme of much literature on health information privacy as it considers the impacts of how health care providers may use (or misuse) electronic health records to process genetic information and other sensitive patient data (e.g., Alpert, 2003).

However, these conceptualizations assume a hierarchy that does not necessarily manifest itself in an online social network. Certainly online social networks may involve citizen–government, employee–employer, and consumer–business interactions. While there may well be consumer–business interactions in health social networks in the form of network members seeking information from staff of the online service (e.g., formal forum moderators or coaches, designated medical experts) or advertisements soliciting business, online social network interactions will generally be dominated by a form of interaction not addressed by most discussions of privacy concerns: non-hierarchical citizen–citizen interactions, users communicating with users as equals seeking the same balance between privacy rights and informational benefits.

One of the above studies acknowledges that health social networks may play by different rules from the typical consumer medical websites. In finding that extroversion shows no significant relationship with health information sensitivity, (Gaurav Bansal et al., 2010) note the the consumer-type website they used in their investigation provides a “leaner” online setting where extroverts “apparently are less forthcoming.” They acknowledge that personality traits may have different influence in different communication settings and recommend further investigation along those lines. Such investigation makes sense for health social networks, as they would provide a richer communication setting where, instead of simply making a commercial transaction for a product, users are engaging directly and often by name with each other. This richer channel can carry more social presence, which could well have more influence over privacy perceptions and behaviors than a “lean” commercial transaction. (Gaurav Bansal et al., 2010) recognize that trust in a website (a factor with a strong positive relationship to intent to disclose health information) could be enhanced for some “customers” by social interaction, the heart and soul of health social networks. Evidence that consumer-oriented research may not capture the full privacy picture in health social networks comes from recent findings that individuals with chronic conditions are more likely to go online to find others with similar health concerns than individuals who do not have chronic conditions (Fox, 2011).

Unique characteristics of online social networks pose challenges to normal privacy expectations and behaviors. The social Web is inherently leaky: they increase the chances for individuals to lose control of information they share (Solove, 2007). Online social networks constitute a “mediated public” where information becomes persistent, searchable, replicable, and open to invisible audiences (boyd, 2007). Information that would be transient in a private face-to-face conversation persists online in entries in the Google cache and copies stored on other computers. Information that would be lost in noise and fallible memory can be retraced and recalled almost instantly by search engines. Information shared online can be replicated in numerous other contexts that may have no direct relation to the original intent that motivated the sharing (such as a discussion on a weight-loss surgery forum about constipation finding its way into a doctoral dissertation on the use of narrative on health social networks). And information directed at one specific person or group in an online forum may be viewed by and provoke reactions from numerous individuals whom the original speaker does not and may not ever know. All of these factors can make social interactions online “eternal,” transcending the moment and context in which they happen and escaping the control of the people originating them (Albrechtslund, 2008). This “eternal” nature is seen in health social network profiles whose stories and data continue to inform their communities even after the originators of those profiles die (Goetz, 2008).

However, concerns about privacy in online social networks often operate from an assumption of vertical hierarchy underpinning the traditional view of surveillance (Albrechtslund, 2008). Concerns about surveillance from some “Big Brother” lead to assumptions that sacrifices of privacy in online social networks stem either from cost-benefit analysis or from ignorance of the dangers. Albrechtslund posits that online social networks support “participatory surveillance” in which individuals empower themselves and each other by sharing information rather than trading it. This participatory paradigm improves our understanding of privacy dynamics online as we witness a shift from the anonymity and pseudonymity that dominated Internet discourse in the first decade of the Web to the increased voluntary posting of personal information on social networks and integration of online and offline activities (Adams, 2010b), a shift enhanced by the increasing availability and popularity of Web 2.0 technology like blogs, Facebook, and Twitter.

Privacy is generally seen as a positive construct, and research focuses on how to protect or preserve it (Angst & R. Agarwal, 2009). One study views sharing health information online as a “disutility” (G. Bansal & Davenport, 2010). Arguably, though, from a health perspective, privacy could be seen as a negative factor standing in the way of building and sharing knowledge and support. In a discussion of blogging in a health social network context, (Adams, 2010b) suggests there is a need for further investigation of whether engaging in online documentation and communication about personal health may motivate individuals to stick with routines in pursuit of their health goals. This suggestion hearkens to the concept of participatory surveillance: health social network users may benefit from being able to “keep an eye on” each other and know that others are similarly keeping an eye on them. Increased information sharing also creates a richer database of disease treatment and patient experience, an advantage that PatientsLikeMe explicitly embraces in an “Openness Philosophy” that challenges the primacy of privacy:

“Currently, most health-care data is inaccessible due to privacy regulations or proprietary tactics,” it declares. “As a result, research is slowed, and the development of breakthrough treatments takes decades. . . . When you and thousands like you share your data, you open up the health-care system. . . . We believe that the Internet can democratize patient data and accelerate research like never before” (Goetz, 2008).

Some users of health social networks report finding informational support among peers that they may not find among their regular physicians:

Thank you for the replies. Of course I will talk to my doctor about this but wanted to come on here because it is more beneficial to me to find out how it affects a person that has had WLS [weight loss surgery]. Doctors are not always familiar with how our new systems work (ObesityHelp.com user, 2009).

User behavior in health social networks suggests different attitudes toward privacy than we might expect in public face-to-face interactions. In ObesityHelp.com, for instance, plenty of interaction takes place privately, in member-only chat rooms and via other protected channels. However, thousands of users post medical information in publicly accessible profiles, blogs, and forum posts. Users identifiable by username, location, and photo openly discuss personal details like weight loss and gain, prescriptions, constipation, sexual dysfunction, and surgical complications that would be considered impolite if not imprudent to share in the physical company of strangers and which would certainly violate HIPAA if released by those users’ health care providers.

It is possible, of course, that many users do not grasp the privacy implications of using health social networks. A study of health social networks for diabetics found varying capabilities for users to control privacy settings and share information; only eight of the ten studied networks offer accessible privacy policies, and most of them are hard to read (Weitzman, Cole, Kaci, & Mandl, 2011). Providing users with more control over publication may actually “induce them to reveal more sensitive information,” a result which raises concerns that users may conflate increased control over publication with increased control over access and usage of their personal information  (Brandimarte, Acquisti, & Loewenstein, 2010). Access and usage pose the real risk of intrusion and harm, but as potential actions of others, they are less salient than the satisfaction users may derive from the immediate exercise of control over their own information publication.

Concern for information privacy has been shown to correlate negatively with likelihood of adopting electronic health records (Angst & R. Agarwal, 2009). However, our own research at DSU on adoption of electronic health records in South Dakota suggests that privacy concerns are not nearly as prominent in the minds of practitioners as other barriers to ER adoption. And whatever privacy concerns may keep some people from engaging with health information technology, there are thousands of users who are willing to share personal stories and health information on health social networks like PatientsLikeMe (Goetz, 2008).

Privacy concerns in health social networks may be mitigated by the sense of community. Consider this observation from multiple sclerosis patient and PatientsLikeMe user Laurie Fournier:

Pretty much everybody I know over 45 has some kind of medical condition. Some people have had cataracts surgery, or they have high blood pressure, or high cholesterol or diabetes. Everyone has something. And if everyone has something, that really levels the playing field (Goetz, 2008).

The sense of community in health social networks may be even stronger among users with rare diseases. Individuals with rare diseases—i.e., diseases affecting no more than 20,000 people—are “power users” of Internet health resources (Shute, 2011). The observation that such users are “ready and willing to share with each other so that other people can benefit from their experiences” (Shute, 2011) suggests the need to look beyond a purely selfish privacy calculus: users may surrender privacy not to gain emotional or informational support for themselves but to provide such support to other members of their online community.

Privacy remains a valid concern for all individuals. Privacy sets boundaries, and people need physical and psychological boundaries to define their sense of identity. The increasing integration of online social networks into daily activities, especially in the area of patient use of health social networks, will not end the value of privacy. However, health social networks emphasize the difference in privacy concerns with hierarchical institutions and with peers who share health interests and goals.

Works Cited

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Adams, S. A. (2010b). Blog-based applications and health information: Two case studies that illustrate important questions for Consumer Health Informatics (CHI) research. International Journal of Medical Informatics, 79(6), e89-e96. doi:10.1016/j.ijmedinf.2008.06.009

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Angst, C. M., & Agarwal, R. (2009). Adoption of Electronic Health Records in the Presence of Privacy Concerns: The Elaboration Likelihood Model and Individual Persuasion. MIS Quarterly, 33(2), 339-370. doi:Article

Bansal, G., & Davenport, R. (2010). Moderating Role of Perceived Health Status on Privacy Concern Factors and Intentions to Transact with High versus Low Trustworthy Health Websites. MWAIS 2010 Proceedings, 7.

Bansal, G., Zahedi, F. “., & Gefen, D. (2010). The impact of personal dispositions on information sensitivity, privacy concern and trust in disclosing health information online. Decision Support Systems, 49(2), 138-150. doi:10.1016/j.dss.2010.01.010

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Shute, N. (2011, March 1). People Coping With Rare Disease Are Internet Power Users. NPR: Shots. Retrieved March 3, 2011, from http://www.npr.org/blogs/health/2011/02/28/134140813/people-coping-with-rare-disease-are-internet-power-users?ps=sh_sthdl

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Come find out what I’ve been working toward for the last three and a half years! On Tuesday, December 7, I will present what we academics call a doctoral dissertation proposal defense.

At 11 a.m., I’ll stand up in front of an audience of stern-looking academics and other interested parties and talk about the really big paper I’m planning to write about my really big research project on storytelling, social networks, and health (see below for the nitty gritty). I’ll talk for 30 minutes; the general public (yes, you!) gets to grill me for 10 minutes. Then my committee grills me for 20 minutes, throws me out to conduct secret deliberations, then drags me back in to tell me whether they’ll let me keep thinking and writing. If my profs give me the thumbs up Tuesday, I get to disappear down the rabbit hole for a few more months, come back out with lots of data, charts, and tested hypotheses, and do a full dissertation defense. And then, if I’m really good, I get some nice letters to put at the end of my name.

Sounds like fun, right? If so, then join in! The proposal defense takes place in the Tunheim Classroom Building, Room 111, on the DSU campus. If you won’t be in Madison on the 7th but would like to listen and submit questions, e-mail me, and I’ll send you a link to the online session.

Ten minutes is an awfully short time for public questions (give me the chance, and I’ll talk with an audience all day long!). If you have questions or feedback that don’t fit in the time Tuesday, I’ll be happy to take your input right here in the comment section. Fire away: just like Johnny Five, I need input!

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The Nitty Gritty

  • Title: “Effects of Narrative on Interpersonal Connection and Communication in Health Social Networks”
  • Date: Tuesday, December 7th
  • Time: 11:00 am (CST)
  • Place: TCB (Tunheim Classroom Building), Room 111

Research Questions:

  1. Does storytelling influence the structure of an online social network?
  2. Do storytellers play a distinct role in sustaining an online social network?

I plan to investigate how people communicate within a health social network, a website providing a forum for interaction among individuals interested in specific health issues (see, for example, CureTogether, PatientsLikeMe, and ObesityHelp). I want to know whether people who use narrative more frequently—i.e., people who tell more stories, share more personal experiences—tend to have more “Friends” (in the Facebook sense of the word) and draw more responses with the online content they provide.

Some theory: Narrative theory says that we make meaning through stories. We are a storytelling species; that’s how we make sense of our world. Social cognitive theory says that social influences shape individual thought and action. Social network theory further supports the idea that our connections with our social network influence who we are and what we do.

Together, these theories suggest that in the context of a health social network, users will gravitate toward information that appeals to their sense of narrative. Personal narratives may provide context, establish authority, and indicate commonality, all of which may appeal more to health social network users than non-narrative information. If narrative content and the users producing it do generate more conversation and connections within health social networks, then that will suggest that storytellers provide distinct value to health social networks and play an important role in sustaining those networks.

In studying the influence of narrative content in health social networks, this dissertation tackles just one aspect of a larger research agenda on the influence of online social networks on health behavior. Like any other health intervention, health social networks matter only so far as they help patients get better, feel better, and live longer. Health social networks may expand our access to information and resources and thus help us make better, more satisfying health decisions. Health social networks may also expose us to all sorts of untested, ill-informed content that leads us to make worse health decisions than if we had just listened to doctor’s orders. Investigating the role of narrative content in health social networks is one step toward evaluating whether health social networks positively influence health behavior.

The department wants to research the impact of online social networks on health decision behavior. Sounds reasonable: if people are using online communities like Facebook and health-specific sites like PatientsLikeMe and CureTogether to seek and share health information, they and their health care providers and even the site designers have a logical interest in finding out how good that information is and how much that information is affecting the decisions people make about their medicine, nutrition, treatments, etc.

Now when I think of an online social network, particularly a health-specific online community, I think of regular folks coming together to talk about their health issues. They seek knowledge because they or someone they care about is ailing. They share knowledge because they want to help others and enjoy a sense of belonging to the community. I might even go so far as to say that they share knowledge because building narratives, individually and collaboratively, is how we make sense of the world and particularly of illness; narrative is an essential component of the healing process. But that’s just me getting distracted again.

So what if the online social network isn’t just a congenial and organic aggregation of mostly well-meaning individuals interested in learning and sharing useful medical knowledge? What if the online social network is, in part or whole, a marketing strategy? What if the primary goal of the network is not to build community or make patients lives better but to increase profit margins?

That concern rises from an NPR report this afternoon on drug companies’ embrace of social media. Novartis was promoting a cancer drug on its website with a Facebook Share widget, letting people spread the word about Novartis’s product. But it’s like the classic “Where’s the Unlike button?” problem on Facebook: Novartis didn’t provide a way for people to share negative information about the drug with equal ease. FDA sent Novartis a warning, and Novartis took down the Share widget, but the company is still working on social-media marketing tactics that will pass regulatory muster.

NPR also points to the example of ShareYourPain.com, an entire social networking site created by drugmaker Cephalon. That ownership raises all sorts of questions about what information company moderators might favor and how authentic all information and participants in the site may be.

NPR says FDA is working on rules for medical marketing via social media. In the mean time, I suggest the following research questions for information systems folks and others:

  1. What percentage of information on health-specific online social networks is actually marketing?
  2. How effectively can participants in social networks distinguish health information from fellow lay people, health care professionals, and commercial sources?
  3. If participants can distinguish marketing from pharmaceutical companies and other vendors from other information, to what extent do they listen to that marketing? Does that marketing have any greater effect on their health decisions than other information?
  4. Are social network participants able to use the online social network and other online tools to effectively investigate and verify the information they receive from marketing sources?

A surprising private study this spring found South Dakota has the highest Facebook adoption rate of the 50 states, with 31.1% of us having accounts on the social networking site.

But that doesn’t tell us how active we South Dakotans are on Facebook. Consumer research group Experian/Simmons issues its 2010 Social Networking Report and finds us about average, far from addict-level in social networking logins:

Simmons Heavy Social Network Index 2010

The Simmons report website doesn’t explain the “Heavy Social Network Index,” and their color-coding appears to be off: the middle-range white region on the legend appears to be light pink on the map. But Simmons appears to show South Dakota middling in heavy social network use, about the same as rural places like upper New England and panhandle Oklahoma-Texas. There appears to be slightly more avid Facebooking in areas of Minnesota and North Dakota. The biggest blob of heavy online social networkers runs through the Rockies to the Pacific Northwest.

Perhaps the most interesting place to study on this map would be Texas, a state with regions falling into each of the five index categories, from way high to way low. What cultural factors might lie behind those differences within a single state?

Cross, R., Parker, A., Prusak, L., and Borgatti, S.P. “Supporting Knowledge Creation and Sharing in Social Networks,” Organizational Dynamics (30:2), 2001, pp. 100-120

Want knowledge to flow in your online community, or through your organization in general? Cross et al. tell us that people turn to other people first much more frequently than they turn to technology first. Here are four factors you have to incorporate into your KM strategy:

  1. Knowledge: Your people need to know their stuff, but they also need to know who knows what stuff, who’s an expert on what.
  2. Access: People have to be available to help each other. Note that means you can’t swamp them: a busy signal isn’t much better than no answer.
  3. Engagement: Your people will really build and share knowledge where there is collaboration. The good knowledge flow comes from the people who are willing not just to dump a bunch of info on you, but who will stick around to answer your questions, to ask you questions, and to participate in the problem-solving process.
  4. Safety: People need to know they can ask and answer without getting shot down. When your people feel safe, they can take chances and be creative. That’s when real learning and innovation happen.

Note that safety may also be a key factor in making complex knowledge flow better. The more complex the knowledge, the more of a risk I take in trying to learn or explain it. I stand more chance of getting things wrong, of looking dumb, of being shown up by someone else. I need to know I’m on safe ground with the people around me before I take that chance.