Virtual Communities in Health and Social Cares
(EN: It's important to note that the author is writing from the European perspective, which differs from the American perspective in very fundamental and significant ways.)
Within the healthcare industry, the last century has led to numerous divisions within the healthcare industry, which lead to a patient's treatment to be split among several different caregivers: their general practitioner, specialists, and a myriad of supporting services. It is not unreasonable to suggest that the care of a single individual involves a large team of professionals from multiple sectors of the healthcare industry. Meanwhile, communication among these parties is already problematic, such that it is virtually impossible for any party, including the patient, to access a comprehensive record of healthcare information pertaining to a single individual.
Additionally, the governments of many European countries are confronted with a decreasing amount of resources and an increasing amount of demand as the population ages, and are confronted with an "urgent need" to contain the rise in healthcare expenditures without compromising quality or access. Consequently, new ways to deliver healthcare services are being considered.
Among the solutions under consideration is the increased use of networked communication to decrease the workload of healthcare professionals by giving patients more responsibility for the management of their own healthcare. Virtual communities have already shown the potential to provide for greater collaboration and communication and the empowerment of patients. Additionally, the understanding and involvement of the consumer of healthcare services has the potential to shift the emphasis to promoting wellness, which is believed to decrease the necessity of treating illness.
In effect, two significant objectives of the healthcare industry are patient empowerment and personalized medicine.
Patient Empowerment pertains to giving the patient a greater degree of authority in determining their own healthcare, which is contrary to common practice in medicine that has often sought to disempowered the patient by making information inaccessible and placing all decision-making authority with the physician and administrator. This trend derives from the increased amount of information available to the patient and the facility of technology for communicating it to them.
Personalized Medicine, meanwhile, pertains to tailoring treatment to the unique needs of the patient - as generics and biochemistry demonstrate that while there are some general guidelines to healthcare, there is much that is unique to the individual patent that merits consideration by the treating physicians. This trend derives on the increased amount of information about the individual patient and the facility of technology to facilitate access by caregivers.
VIRTUAL COMMUNITIES IN HEALTH AND SOCIAL CARE
The author considers a virtual community to be a sustained online discussion that results in "webs of personal relationships" among the participants. It is noted that discussions of health care issues were common in the early days of the Internet, and patients and care-givers quickly formed online support groups.
In addition to patients and their families, the groups have attracted healthcare professionals, educators, service providers, and members of the general public. Some groups are exclusive to certain segments (there might be a discussion restricted to embers of a professional group), others are open to any interested party.
The uses of these groups vary according to the role and goals of participants. (EN: the author continues with some general remarks, but the bulk of the article provides more detailed examples)
A TAXONOMY OF VIRTUAL COMMUNITIES IN eHEALTH
Certain conditions require specialized treatment from a number of different caregivers (physician, surgeon, oncologist, pharmacist, therapist, etc.) While it is not yet commonplace for the members of such "teams" to use technology to communicate about the treatment of a given patient, it is common for professional communities to arise, enabling professionals to communicate with one another about the treatment of the condition in general. While such professionals could receive new information through traditional publishing (trade journals) and professional associations (conferences), The medium is unimportant: the interaction and exchange of information Is just as effective, and possibly more effective, when done using technology, as technology makes communication more convenient, more frequent, and more interactive.
The concept of "virtual disease management": pertains to the use of Internet technologies that enables a patient with chronic and debilitating conditions to stay at home, and communicate with caregivers through the medium. This can be done by text conversation, videoconferencing, or even the use of internet-enabled monitoring devices. Examples are provided in the treatment of asthma, hypertension, diabetes and cancer - in which the monitoring devices provide information about the patient's ongoing condition to a doctor and an "alert" can be sent if any drastic change is noted, with emphasis on the improvement to the patient's care and perceived quality of life as a result of being freed from the necessity of constant clinical visits.
Aside of communication between patients and caregivers, there are numerous peer-to-peer communities online - independent communities that patients may join or leave at their own discretion. Many of these communities exist outside the healthcare industry, enabling people with common conditions or needs to gather and share information. While the healthcare industry pales at prospect of non-authoritative sources of information (whether out of genuine concern for the welfare of patients or concern for their own "business" interest), it's generally noted that such groups can be helpful for patient-to-patient support for those who may not have other patients in their area or may be reluctant to discuss their condition openly for fear of social stigmatization, which has been shown to mitigate depression. Similar benefits are cited in peer-to-peer networking among the family members who must often cope with the conditions of an ailing relative.
Another long-standing use of the Internet is in communication and research sharing in the academic and scientific communities (which is, after all, the entire reason the Web was undertaken). It's suggested that the Internet has the ability to radically change communication in the academic community, enabling researchers to self-publish and collaborate with others. However, there remains the problem of a lack of a common infrastructure and a reluctance of both academic and commercial research centers to share any but the most superficial of information.
The author investigates the concept of "grid" and "semantic" technologies, which propose to provide greater transparency and access to the information stored in an array of incompatible databases, libraries, and other repositories, as a partial solution to the problem of the inaccessibility of information in the healthcare industry. (EN: There's nothing particularly new here, and my sense that the problem of reluctance to share is more significant than the lack of tools. Until the first issue is addressed, the second is moot.)
EFFECT OF VIRTUAL COMMUNITIES ON OUTCOMES
While there is great potential in communication technologies, and significant demand among consumers, there remains the question of outcomes: in effect, investigating whether there is any hard evidence that virtual communities do any "good" in terms of improving the quality of health care, as well as whether the evidence suggest that a significant investment of resources and legislative effort to support this use of technology is worthwhile.
In many instances, the benefits of technology are new and difficult to assess. It can objectively be stated that technology enables geographically dispersed individuals to communicate better, there remains little more than anecdotal evidence that facilitating this communication has a positive impact on the quality of care.
There is also ongoing debate, in which the opponents of technology claim, with equal fervor, that the use of technology detracts from the quality of healthcare (a video examination being less effective than an in-clinic consultation). The "Home Net" study at Carnegie Mellon (1998) provided "alarming" evidence of the possible harmful effects of the Internet - specifically in that "social technology": led to an increase in depression and stress, and caused patients to feel more socially isolated (internet communication being weaker and more superficial than face-to-face encounters), and a later study that contrasted cancer patients' interactions noted a significantly higher incidence of depression among patients who participated in virtual support groups when compared to actual ones.
The author suggests that there is no clear indication that Internet support groups cause depression and isolation, or are merely less effective at mitigating it, than in-person support groups. (EN: which seems rather desperate - whether a course of action "causes harm" or merely makes a person less likely to accept a more effective alternative, the net result is a decrease in the quality of care.)
ETHICAL CHALLENGES
From a societal perspective, the replacement of any person-to-person interaction with a person-to-machine one, is seen as a "progressive dehumanization" of society. The extremist suggestion is of degradation in society that results from human beings who lack, more and more, the daily experience of interacting with other people. This is seen as particularly pertinent to the replacement of the caregiver with a mechanical device in healthcare, as the body has an intense psychological effect on a person's sense of self and relationships with other selves.
Another significant concern for healthcare is the use of technology to deceive, particularly in the potential for an individual or organization to impersonate a patient or a doctor with a goal of gaining the confidence of or influence over other patients. (EN: The author carries on a while, but this is not a ethical issue so much as a security concern for site operators and a need for participants to approach with caution.)
Privacy and confidentiality of health information is of paramount importance, especially when it pertains to the use of information technology by practitioners to communicate about a specific individual. Concern in this area is cited as one of the primary barriers to the adoption of technology by the healthcare industry. (EN: again, not an ethical problem but a practical one - the ability to protect sensitive information in systems.)