Journal of Pediatric Psychology Advance Access published online on August 13, 2008
Journal of Pediatric Psychology, doi:10.1093/jpepsy/jsn088
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Commentary: Electronic Communication in the Pediatric Setting—Dilemmas Associated with Patient Blogs
Children's Hospital Boston and Harvard Medical School
All correspondence concerning this article should be addressed to Rachel Tunick, Children's Hospital Boston, Hospital Library, 300 Longwood Ave., Fegan Plaza, Boston, MA 02115, USA. E-mail: rachel.tunick{at}childrens.harvard.edu
Advances in communication and technology have posed serious challenges to some of the fundamental ethical principles upon which psychologists operate, including the protection of patient privacy and confidentiality and the ideals of beneficence and nonmaleficence. In pediatric settings, efforts have been made to limit inadvertent dissemination of personal information in public areas such as hallways, cafeterias, elevators, and hospital emergency departments (Olsen & Sabin, 2003
; Patient privacy, 2004; Ubel et al., 1995). Likewise, legislation (The Health Insurance Portability and Accountability Act, HIPAA, 1996) now imposes standards around electronic transmission of protected health information, and psychologists are addressing privacy and confidentiality concerns in the context of computer-mediated clinical services (Drotar et al., 2006). However, recent phenomena in electronic communication, including the use of weblogs, or "blogs" (easily updated personal web pages that allow for visitor comments) by patients and their families, raise new and unique threats and dilemmas regarding our ethical and professional principles.
Blogging in the pediatric setting has become increasingly commonplace. Several websites (e.g., CaringBridge.org, CarePages.com) are devoted exclusively to supporting blogs hosted by medical patients and families, and countless other blogs of this nature are hosted on more general social-networking websites (e.g., MySpace, Facebook) or maintained personally. The phenomenon has been growing at an explosive rate: CaringBridges boasts that on their site alone, over 150,000 families have created blogs which have been visited over half a billion times (CaringBridge, 2008). As child psychologists, we appreciate the range of inherent benefits of these forms of computer-mediated communication for patients and their families. Maintaining a blog may allow for cathartic narration regarding stressful medical experiences, thus facilitating adaptive coping. Blogs also promote efficient communication with countless friends and family and permit unregulated "visitation" (through visitor comments) regardless of geographic distance or hospital policies, thereby providing users with ongoing emotional support. Similarly, social networking sites may facilitate identity exploration, promote social support, and encourage perspective-taking skills, particularly for adolescent users (Tynes, 2007).
Despite these and other potential benefits, the widespread and unconstrained accessibility of patient blogs poses pediatric psychologists with unparalleled challenges. There are four main categories of typically encountered ethical and professional dilemmas related to patient and family blog use: (a) privacy/confidentiality of other patients, (b) professional reactions/reputations, (c) privacy of the child/family, and (d) therapeutic boundaries.
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Privacy/Confidentiality of Other Patients |
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Blogging in the pediatric setting may result in situations that compromise the privacy or confidentiality of other patients. Parents may, for example, include identifying information about other patients on their own child's blog without explicit consent (or even knowledge) of those children's parents. Such scenarios raise dilemmas around how to handle situations in which we are aware that the protected health information of other patients is being compromised.
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Professional Reactions/Reputations |
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Parents may include identifying information regarding physicians, nurses, or other clinicians in their child's blog. These entries may include disparaging content regarding staff competence or professionalism. Most concerning is when such slander is discrepant from real-life conversations amongst family and staff, suggesting dangerous communication breakdowns. When clinicians become aware of such content this may lead to unease, distress, fears regarding potential legal ramifications, and/or reluctance to continue to care for the child, all of which may compromise patient care (Hurley & Smith, 2007
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Privacy of Child/Family |
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Blogging is an inherently public act due to the widespread accessibility of the internet, yet families often fail to fully appreciate the ease with which countless strangers may view their site's content (Viégas, 2005
). Many blog-hosting websites offer varying levels of privacy protection which users may choose whether or not to employ. However, many websites do not include this feature. On those that do, users may not realize such features exist, while other users may not fully grasp the implications of not implementing such protective measures. Unless one implements the highest level of privacy protection, the audience of a particular blog is impossible to measure. When families fail to appreciate the public nature of their blog, the privacy or confidentiality of the child or family maintaining the blog may be compromised. We have witnessed dramatic scenarios of this nature, including a recent experience in which the parents of a child who had received a heart transplant were paid an unsolicited visit by the family of their son's organ donor. Not surprisingly this situation was quite alarming for the family and clinicians caring for this patient. Other less dramatic, though equally concerning, situations arise quite regularly. For example, teenage patients who maintain blogs may be quite naïve regarding their privacy, and this may increase their vulnerability to share inappropriate personal information and communicate with unsavory individuals.
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Therapeutic Boundaries |
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Clinicians who read patients’ blogs or social networking sites may inadvertently learn information that may warrant clinical intervention, and which might not be otherwise known. For example, in a recent experience at our institution, a psychologist read a blog entry in which the mother of a critically-ill patient concluded with a wish that she could "go to sleep tonight and not wake up again." Similarly, clinicians who read their patients’ blogs may encounter information that the patient might not have otherwise disclosed, such as engaging in risky behaviors (e.g., substance use, illegal activities). These types of situations raise concerns regarding our follow-up course of action.
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To Read or Not to Read: Guidelines and Recommendations |
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All of these dilemmas hinge upon the question of whether clinicians should read patients’ blogs or social networking sites. It might be argued that psychologists be advised against this practice, given the host of predicaments in which this behavior might result. However, there are some fairly compelling reasons for us, at times, to read blogs maintained by our patients. Clients may invite our readership, which may be beneficial for information sharing and alliance building. We may gain insight into how the family is coping, which in turn may help us to more effectively tailor our interventions. Moreover, important concerns might not come to our attention were it not for reading a patient's blog. For example, as illustrated earlier, parents may write about their dissatisfaction regarding their child's medical care, while not expressing these concerns directly to their child's care team. Reading such discrepant accounts may promote our ability to alleviate distress and facilitate more open and productive communication around the patient's care. Likewise, a psychologist who learns about her patient's drug use from material within his MySpace entries may confront the patient about this activity and follow-up with interventions as warranted.
So, should we be reading our patients’ blogs? Our strong recommendation on this matter is to promote transparency and honesty around this decision process. If we are considering reading a patient's blog, we must carefully examine our motivation, weighing potential benefits around clinical care with anticipated risk for harm. We must engage in thoughtful self-reflection to determine whether reading serves a clinical benefit, or merely represents a prurient curiosity. Should we choose to read, we must address this matter directly with the family in advance, informing them of our intentions and motivations, and requesting their permission to access their website. In this way, if concerns later arise regarding entry content (e.g., expressed suicidal ideation; incriminating information regarding substance use or other risky behavior; "naming names" of other patients), we will have preemptively established a situation, based upon honest and open communication, in which to effectively address these matters with the patient or family.
In addition to transparency around our decisions to read patient blogs or social networking sites, we encourage openness in our communications with families regarding their electronic communication practices. Clinical psychologists should regularly assess whether families may benefit from ongoing education concerning the potential privacy risks inherent in blog use. In situations where concerns arise regarding content contained within the patient's webpage, clinicians are encouraged to speak directly with family members and to make efforts to work collaboratively to remedy these matters. For example, in circumstances where hospital staff members are disparaged on a blog, staff may inform the family that this matter has come to their attention, share concerns that such communications may inadvertently compromise clinical care, and initiate conversations to ameliorate underlying distress. The pediatric psychologist can be helpful in guiding staff in these interactions. Similarly, if we are working with patients whom we consider to be particularly vulnerable or naïve regarding internet privacy, it is prudent to periodically review with them safety parameters regarding content included on their websites.
These general recommendations are also applicable at an institutional level, and warrant discussion within our places of employment. Particularly in cases where families maintain blogs on websites that are institutionally sponsored (such as CarePages), the sponsoring facility may establish guidelines and regulations around general content that is and is not appropriate for inclusion within blogs. For example, parents should be advised against the inclusion of identifying information regarding other patients and families, with rationale around the safeguarding of protected health information of all whom we serve.
In today's age of ever-expanding technology, we can be certain that we will continue to encounter professional and ethical dilemmas related to families’ use of blogs, other forms of computer-mediated communication, and the increasingly unique ways in which families share information electronically. This highlights the need for our profession to develop and implement guidelines or practice parameters aimed at maximizing the benefits of blogging while minimizing the inherent risks. We urge our colleagues to give careful consideration to these matters, and to pursue research investigation to further elucidate the complex issues associated with this communication practice in the pediatric setting.
Conflicts of interest: None declared.
Received February 29, 2008; revision received July 17, 2008; accepted July 17, 2008
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CaringBridge.org. (2008) Retrieved on July 16, from http://caringbridge.org/about.
Drotar D, Greenley R, Hoff A, Johnson C, Lewandowski A, Moore M, et al. Summary of issues and challenges in the use of new technologies in clinical care and with children and adolescents with chronic illness. Children's Health Care (2006) 35(1):91–102.[CrossRef][Web of Science]
Health Insurance Portability and Accountability Act (HIPAA) of 1996. (1996) Pub. L. No. 104–191.
Hurley M, Smith C. Patients’ blogs: Do doctors have anything to fear? British Medical Journal (2007) 335:645–646.
Olsen JC, Sabin BR. Emergency department patient perceptions of privacy and confidentiality. The Journal of Emergency Medicine (2003) 25(3):329–333.[CrossRef][Web of Science][Medline]
Patient privacy at risk in hallways and cafeterias (2004). Hospital Case Management (2004) 12(11):169–170.[Medline]
Tynes BM. Internet safety gone wild?: Sacrificing the educational and psychosocial benefits of online social environments. Journal of Adolescent Research (2007) 22(6):575–584.
Ubel PA, Zell MM, Miller DJ, Fischer GS, Peters-Stefani D, Arnold RM. Elevator talk: Observational study of inappropriate comments in a public space. The American Journal of Medicine (1995) 99(2):190–194.[CrossRef][Web of Science][Medline]
Viégas FB. Bloggers’ expectations of privacy and accountability: An initial survey. Journal of Computer-Mediated Communication (2005) 10(3). article 12. Retrieved August 5, 2008, from http://jcmc.indiana.edu/vol10/issue3/viegas.html.
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