More than 90 million Americans, representing over 84% of Internet users, participate in online groups [6]. Of these, almost 30% participate in medical or health-related groups. Such widespread use represents attempts by patients and others to fill voids that exist in the current health care system. Specifically, their participation in online health care groups is motivated by the inability of contemporary medical practice to meet the needs of patients that go beyond the physical-medical treatment they receive.
Participation in these online groups is voluntary, and such volitional use of a technology is an indicator of its success, according to the IS success model [2, 4]. Widespread usage, however, is only one dimension of technology success. The model also identifies “net benefits” trickling down to other stakeholders as a further indicator of information systems success [2]. As yet, the full potential of these downstream benefits (as indicated in Figure 1) has not been realized.
So how can we ensure that all players in the health care system realize the potential benefits that online communities can offer? First, we need to understand why and how patients use this technology. People today, in postmodern society, have a propensity to form loose, ephemeral, social networks called neo-tribes, to satisfy fundamental social needs. The Internet has greatly facilitated the formation of these neo-tribes, manifested as virtual communities. The widespread popularity of patient communities has emerged due to a “fit” between the participants’ needs and the technology’s ability to satisfy these needs. Such a fit has been discussed as “task-technology fit,” a precursor to technology usage, in the IS success literature [4]. We extend this concept to add a third aspect, the sociocultural, which gives additional insight into the success of this technology (see Figure 1).
Second, a deeper understanding of patient needs specific to health care that are satisfied by these neo-tribes, is necessary. This would help identify opportunities for the various health care stakeholders to contribute to improved quality of patient care by their active participation in such communities, with consequent individual and synergistic benefits. By observing and interpreting patient use of this technology, we offer concrete suggestions to stakeholders—so they can cultivate these communities for the maintenance and well being of patients.
The Sociocultural Context
We reflect on the sociocultural context of patients today primarily to help address the question, “Patient communities: why?” The postmodern society of today is characterized by social dissolution and extreme individualism [1]. Postmoderns have been depicted as modern-day nomads. Lack of traditional community, transient relationships, and fragmented family units are hallmarks of this atomized, isolationist society. Social structure, however, has not disappeared; it has merely evolved.
Sociologists have observed the beginnings of an antithesis, or attempts by postmoderns to reconstruct the social fabric on their own terms, with links of their own making and choice. They term this phenomenon, “neo-tribalism” [7]. Tribes are networks of persons gathering for social interaction. Neo-tribes are unique in that they are fluid, ephemeral, and nebulous; they form, gather occasionally, disperse, and form again.
Neo-tribes defy the claim that postmodern individuals are isolationists. Rather, they demonstrate that humans have deep-seated needs for exchange and interaction, communication, and establishing the communal link. These needs are entrenched where the winds of socio-cultural change may shape and mold their surface manifestations, but cannot affect their roots. In the hostile environment of postmodernism, they appeared to shrivel, but actually thrive in new ways. They need to be satisfied for the sustenance and well being of mind and body.
Many of these neo-tribal links have burgeoned in the Internet’s virtual world. Patients living in postmodern society construct virtual communities so their multifaceted health needs can be addressed, in ways that the traditional health care infrastructure has been unable to. Before we elaborate on this, we look first at what constitutes an online community, from a technology perspective, in line with the model in Figure 1.
The Technology of Online Communities
An online community is composed of four essential elements: people, purposes, protocols, and technology. The members of such a community have shared purposes, and they interact socially by adhering to tacit and explicit protocols, rituals, and roles using Internet technologies that support interaction [9]. The technology required is not complex. A simple email-based online community can be created by setting up a listserv for a group of users. Others are built using some combination of Web pages, chats, bulletin boards, email, instant messengers, and databases. Table 1 summarizes three approaches to setting up the technological infrastructure.
The key characteristics of these technologies that “fit” with the “task” for patients include the technologies’ ability to: facilitate synchronous and asynchronous interaction; enhance information richness through multimedia; provide a range of information for various information processing needs; and be ubiquitous, as well as impervious to spatiotemporal limitations. Further, their ease of use, mass-market appeal, affordability, and universal operating standards have enhanced their network effects.
Task: Satisfying Multifaceted Patient Needs
Patients today do not suffer from simple medical problems. The physical manifestations of illnesses are understood to have complex, interlinked, cognitive-affective-conative-physical-environmental causes and dimensions, as depicted by the double-headed arrows in Figure 2 (see Figure 2 for explanations of these terms).
According to David Sobel, M.D., of Kaiser Permanente: “A significant amount of the suffering and problems of patients in primary care cannot be explained based on findings of organic, medical, or physical disease. Up to 20% have diagnosable psychiatric distress, which often expresses itself through physical or bodily symptoms.” Generally, physicians deal with an ailment largely at the physical level. Psychiatrists and/or psychologists handle a psychological ailment by dealing primarily with the affective-cognitive aspects. Ideally, the best treatment is a holistic one, which manages the different dimensions in an optimally balanced manner, customized to the needs of the individual patient. From an economic standpoint, when these different facets of the health problem are not addressed, patients tend to overutilize medical services and become an increased burden on their physician’s time and resources [10].
The current medical scenario does not provide the holistic or integrated medical treatment that is the ideal. The managed care system demands that overall effectiveness, from the individual patient’s point of view, be sacrificed for the sake of efficiencies in the time and other resources of health care personnel.
From patients’ point of view, their needs in dealing with an ailment are typically multifaceted, depicted by the triangles in Figure 3. However, the typical patient’s physician office visit (POV) can only address a portion of his or her needs. It may be viewed as a “point interaction” because it is discrete, discontinuous, and takes place at a point in time and space. The POV is not able to provide the patient with the continuous affective, conative, social-environmental, or other support, which could result in optimal treatment outcomes. This is one reason patients turn to these virtual neo-tribes to meet their needs more completely.
Optimal treatment outcomes also require patient compliance with prescribed treatment. According to estimates, 100 million prescriptions go unfilled in the U.S. each year, and an estimated 125,000 Americans die each year from noncompliance, or failure to take their medicine as prescribed. A major cause of noncompliance is lack of comprehension of the treatment, fueled by lack of information. To illustrate, an antibiotic prescribed to be taken three times a day must be taken every eight hours, in order to maintain the desired blood levels of the medication. Physicians or pharmacists may not explain this to the patient. Missed doses, incomplete treatments, and doses that are incorrectly spaced, are all manifestations of a patient’s lack of comprehension of the treatment. There is little the POV can do to alter this scenario, given the economic, personnel, and time constraints on the existing system. However, patients have discovered that their involvement with online neo-tribes helps them to comprehend their treatment to a greater extent, through information sharing with others suffering from the same ailments. Comprehension involves assimilating adequate and relevant information from their environment (such as the POV and their communities), integrating it with their existing knowledge base, and interpreting the treatment as having desirable outcomes. If this cycle of information processing is complete and adequate, there is a much higher likelihood that the patient will then take the necessary actions to comply with dosage requirements. A simple example of this is patients’ being accountable to each other in taking prescribed treatment.
Online Communities—Patient Behavior and Benefits
Information flow, exchange, and storytelling. Humans aggregate in social organizations for interaction and exchange. For online tribes, the overriding purpose is information sharing and exchange of medical information and life experiences tied to the ailment. Continuous flow of information is the warp of the community fabric. Researchers have labeled this neo-tribal behavior “storytelling” [8]. Participants ask questions, pose problems, and provide answers and solutions through their storytelling.
Online neo-tribal participation satisfies many of the multidimensional needs of patients and their caregivers—the affective, spiritual, cognitive, even the behavioral, in ways that the traditional health care infrastructure fails to accomplish. As an illustration, consider multiple sclerosis (MS), a degenerative neurological disease with no known cure. Faced with fear-inducing uncertainty about their body and health, MS patients reduce their uncertainty by researching the condition on Web sites such as that of the National Multiple Sclerosis Society (www.nmss.org/). If such sources satisfied all their needs, merely providing public access to Web sites with quality health information would be sufficient. But MS patients look beyond such Web sites, to the community-based support obtained by information sharing and exchange with highly credible sources (others suffering from similar ailments in the community), thereby reducing their own skepticism, fear, and uncertainty to manageable levels. One such widely cited health care neo-tribe is Club Avonex (brain.hastypastry.net/forums/), where MS patients worldwide coordinated weekly injections and met in a chat room to self-inject at the same time. Linking with each other during this painful procedure illustrates the behavioral-affective-cognitive-spiritual support shared, as verbalized by the following sampling of postings:
“For a while I thought it was all in my head. Not to mention the fact that I was scared. Although I am still somewhat scared, I do know that it feels good to know I am not alone and that I can share and learn with you all. I have so many questions.”
“I hope someone can help me, I am crying out for help at the moment, let me first explain all that has been going on.” The participant then described his symptoms and frustrations with the lack of a clear diagnosis, and concluded, “Can anyone shed some light on this situation?”
The respondent to this post offered tremendous sympathy and advice as to how to proceed with doctors and neurologists, and concluded, “I’m sorry you’re having to go through this, but glad you found us. Write any time and we’ll help all we can. I’ll be keeping you in my thoughts and prayers.” This holistic approach to treatment is a hitherto overlooked one that can contribute substantially to the quality of patient care and to measurables such as improved compliance rates.
Group problem solving, insights for research, and pervasive memory. “Can anyone help…?” “Does anybody know…?” are questions frequently encountered in health care postings. These invite the pooling of isolated fragments of knowledge, forming a rich web of collective intelligence. Health care researchers would do well to tap into this bountiful pool of experiential information, to supplement their more structured research, to gain insights that might otherwise be lost. The following posting is an example of such a possible insight from a TM (transverse myelitis) community (www.myelitis.net/ phpBB2/):
“Maybe I’m off the wall here but I’m noticing so many people connected with Ohio and TM. Probably nothing to this—I mean no significance but it just seems like everyone I talk to has been to the Cleveland Clinic. Tina lived in Cincinnati around the time she first got TM…at any rate, a lot of people on here (the community) seem to pass through Ohio.”
“But, more interesting is your question about antibiotics. That I find to be a really interesting one. I’ve heard that a lot of people had a virus or flu before TM and shots before TM, but I never thought about the antibiotics. Hmm…I wonder?”
Such insights may be invaluable for medical research, where the causal factors of a disease, or the pattern of adverse drug reactions, are difficult to establish. Further, if online patient information can be collected, harnessed, and disseminated systematically, it could potentially alter the way medical research is conducted. At present, patients play a relatively passive role as subjects in clinical trials. They provide feedback, but in very structured ways. Harnessing the spontaneous flow of information available in online communities could richly complement existing modes of research.
Examples of such, although isolated, do exist. One such is the Life Raft Group (www.liferaftgroup.org/), an organized community of GIST (gastrointestinal stromal tumor) patients. This group was initiated by a retired CDC official, who coordinates information flows among patients, pharmaceutical company executives, and cancer researchers [3], with the purpose of promoting research and furthering knowledge about the little-known condition.
An added benefit is that these spontaneous conversations can be observed with minimum intrusiveness, enhancing the authenticity of the information gathered. In addition, the information generated as a result of this ongoing group problem- solving effort is preserved in a pervasive, accurate, and comprehensive memory.
Bonding, spillover benefits, and spatial and temporal independence. The ritualistic storytelling referred to earlier enables emotional bonding; community participation is reinforced affectively by the kinship provided by the neo-tribe, termed by sociologists, “consciousness of kind” [5]. It refers to a sense of identity or the camaraderie that members feel toward one another. Neo-tribes help satisfy fundamental emotional and cognitive needs of patients.
Consistent with Figure 2, the affective-cognitive reinforcement obtained through these interactions has other positive physical-behavioral outcomes for the patient. Researchers studied the effects of participation in a virtual community called Starbright World (SBW) (www.starbright.org/projects/sbworld/) for children suffering from life-threatening diseases such as HIV. Here, children played games, learned about their medical condition, and interacted with other chronically ill children. Researchers reported significantly less loneliness and withdrawn behavior, and improved patient compliance with treatment. There was also less worry, anxiety, depression, and resistance to treatment [11].
Being time- and space-independent, virtual neo-tribes let people bond without being in close proximity, potentially a valuable social lifeline for those homebound due to illness, age, or handicap, or those isolated in rural settings.
By understanding the sociocultural backdrop, and how patients use these communities, health care providers will see the need to cultivate them for improved quality of the patient’s health care experience, with minimum investment on their part.
Downstream Benefits
The popular usage of online communities indicates the success of this technology. However, as yet, the net benefits have not percolated to other stakeholders in the health care system such as physicians, pharmaceutical companies, and society at large. The potential of online communities to accrue benefits to these stakeholders is summarized in Table 2.
While reading Table 2, it is important to keep in mind that health care professionals have traditionally been late adopters of new technologies, weighing their time and money costs against possible benefits. They have tended to lag behind patients in adopting this and other technologies. Hence the first point in Table 2; by merely making themselves aware of patient communities, physicians can still contribute to an improved quality of the patient experience by pointing them to suitable communities. By understanding the sociocultural backdrop, and how patients use these communities, as outlined here, health care providers will see the need to cultivate them for improved quality of the patient’s health care experience, with minimum investment on their part.
Limitations
As with other technologies, online communities have limitations:
- Access. Not every patient who can benefit from community participation has the means to access one. Computers are still relatively expensive and an Internet connection is required. Until the digital divide is bridged with universal accessibility and low cost, this problem will perpetuate.
- Ease of use. Patients unaccustomed to computer use may struggle with using unfamiliar software and hardware. The skill set required to use computers is more sophisticated than that for learning to use a cell phone, for example. The elderly and those with disabilities, in particular, may be at a disadvantage when it comes to using this technology.
- Fragmentation. Currently, each community is a wealth of information, but isolated. If each community was linked together, benefits from the collective intelligence could be dramatically improved. BrainTalk (brain.hastypastry.net/ forums/) is one such collective of communities, created at Massachusetts General Hospital as a centralized host for more than 250 communities focused on neurological conditions.
- Authentication and accountability. Most community members use login IDs in place of proper identification. Personal disclosure is limited, hindering authentication or accountability.
- Commercialism and privacy. These are issues that arise with participating firms. A clearly delineated privacy policy is essential. The guiding principle should be to respect participants’ sensitivities, and to rigidly adhere to their expressed wish and consent. Opt-in marketing programs, for example, are those where participants have expressed their willingness to receive special offers, promotions, and messages.
- A generation of hypochondriacs? Some commentators suggest that the abundance of health-related communities could potentially spawn legions of hypochondriacs, to the dread of already-taxed medical professionals. Hypochondriacs do exist and possibly thrive on the abundance of medical information on the Internet. However, in general, participants in medical communities are patients or their caregivers with genuine needs. The interaction with real patients in communities may actually serve to reduce hypochondriases, and keep hypochondriacs from wasting valuable medical time and resources.
- Safety and security. These issues are of paramount concern for participants. Rules for participation must be clearly stated and registration should be required for participation. A clear statement of how the information gathered during registration will be kept secure must be provided. A moderator may be needed to oversee behavior and to enforce these rules. In general, there is substantial self-regulation by participants who move swiftly to curb aggressive and inappropriate behavior.
- Misinformation. Physicians have expressed concern about patients spreading misinformation or incorrect information through these communities. This is a valid concern, and the only way to get around this problem is for participants to be aware of this potential problem, to crosscheck information with medical sources, and to become discerning users of such information.
- Trust. For some, the trust-building potential and assurance of a face-to-face dialogue may never be replaced with impersonal digital interaction.
Conclusion
A holistic treatment that focuses not just on the physical ailment, but also on the affective-cognitive-conative aspects (Figure 2) helps better promote patient well-being, and has larger social and economic impacts on the entire U.S. health care system. Such a treatment entails satisfying the multifaceted needs of patients, but is hindered by the limitations of the POV. Online communities, or virtual neo-tribes, are emerging as supplements to the POV to help satisfy patient needs, but such communities flourish largely on the fringe of the current health care system. Sponsorship and participation in such online communities by physicians, health care organizations, and pharmaceutical companies have the potential of not only enriching the physician-patient relationship, but also accruing benefits to other stakeholders with larger positive impacts on the nation’s health care system.
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