Clinical Discussions and Groups

Throughout medical history, doctors have talked to one another, patients have talked to one another, and doctors and patients have talked to each other. With the new advances in information technology, such communications have become faster, cheaper, and, in some cases, more anonymous. For well over a century, doctors have made use of conferences, journals, and textbooks to exchange information. Recent innovations in technology have moved such discussions to the Internet and made them more instantaneous, using listservs and Web-based forums. Listservs are discussions sent by e-mail to groups of subscribers. Forums are dedicated websites, organized by topic, in which people post questions, answers, and news.

Speeding up communication is no small thing. It can take one or two decades for a therapeutic advance to become part of routine clinical practice (http://www.ahrq.gov/research/trip2fac.htm). The ability to learn of such advances within days and hear considered responses from leaders in the field results not only in an increased speed of learning of new advances but also in attention being directed to potential problems in the published interpretations of these studies. Web forums and listservs are also popular, in part, because they have created an environment that encourages spontaneity and sharing of hypotheses.

The specifics of the technology of listservs versus forums seem not to matter very much. What matters most is the community. The Child-Neuro listserv (http://www-personal.umich.edu/~leber/c-n/e-mailUM.html) was established in 1993, using what is now the antiquated technology of text-format messages distributed individually or in daily digests. Despite the antiquated technology, the Child-Neuro listserv continues to be the core Internet discussion group in the field, whereas more technologically sophisticated Web-based discussion services, such as Sermo (http://www.sermo.com/), have less impact because they do not have the same presence of experts.

The situation is somewhat different for discussions among patients, since the communities are new. In the past, patients had much less contact with each other due to difficulty finding one another and the reluctance to disclose illness to people they knew personally. As a result of the anonymity of the Internet and the ability to find others with similar problems through search engines, there has been a huge proliferation of patient–patient discussions. Since such patient–patient discussions are new and are typically open to the general public, they have tended to use newer Web-based forum technologies. Communities such as PatientsLikeMe (http://www.patientslikeme.com/) and Brain Talk (http://braintalkcommunities.org/forums) have become metasites for people with neurological diseases. Some forums offer advanced community capabilities. For example, PatientsLikeMe allows users to search for others with similar symptoms, an ability that can be used for identifying hypotheses to test in controlled studies. In addition to these metasites, there are communities for individual disorders, such as attention-deficit disorder (http://www.addforums.com/forums/index.php), as well as listservs for longer-standing communities with chronic diseases, such as the listserv of the Periodic Paralysis Association (http://www.periodicparalysis.org/).

Another trend is recent years is medical blogging. Blogs, the shorthand term for “weblogs,” are websites on which articles, commentary, and other forms of textual, graphic, or multimedia content are posted. Blogs are often run by a single individual, providing a personal perspective and a top-down structure. As the costs associated with running a blog have fallen essentially to the cost of the time involved, there has been a proliferation of blogs. In medicine, blogs have tended to cover medical practice and common diseases; blogs covering rare diseases would have very small audiences, and online communities make more sense as forums for such communication. However, there is quite a continuum. Blogs are sometimes a group effort and typically include some discussion in each thread, and discussion groups often have several regulars who sustain the discussion. So, in actuality, there are hybrids between pure blogs and pure discussions that have evolved to meet the needs of individual communities.

One of the important growth opportunities for online discussions is breaking down the separateness of doctor–doctor and patient–patient discussions to create doctor–patient discussions. Doctor–patient discussions are the core of medical practice, and there is much value in such discussions being shared among wider communities. An advantage of the Internet is the ability to have doctor–patient discussions with anonymity that one cannot achieve by group visits to doctors (although, despite this ability to remain anonymous, both doctors and patients frequently will use their real names in such settings). The main barriers to doctor–patient discussions on the Internet are the absence of physical examination and medical records from other doctors, making the doctor less confident about giving advice, and the lack of incentives for physicians to provide such assistance with commitment and consistency. However, this may be merely an issue of coming up with the proper incentives and structures. One of the authors of this chapter has spent a significant amount of time in the past year interacting with patients on a variety of sites as part of an effort to uncover the molecular mechanism of attention-deficit disorder. The patients would make little progress by themselves, since they lack the deep expertise of the doctors in understanding the biology of disease. The doctors would stagnate without the patients’ descriptions of their clinical symptoms. The combination is much more effective. In the past, progress could be made by studying the patients in a large clinical practice and hearing their observations personally, but such a process is difficult to arrange for less common diseases. Now, the ability to have such interactions is much accelerated, allowing patients to be true partners with doctors, not only in decisions on treatment, but also in advances in understanding pathophysiology.

A movement that calls itself “Health 2.0” has touted patient–patient discussions as a replacement for many types of doctor–patient interactions and replacing top-down “information therapy.” Health 2.0 is the exchange of information in Internet forums “that get richer as more people use them” by “harnessing collective intelligence” (http://www.aan.com/news/?event=read&article_id=5277), whereas information therapy involves more traditional instructional materials provided by doctors (http://www.informationtherapy.org/). However, drawing a distinction between Health 2.0 and information therapy may be more theoretical than real. As an example, the patients in the listserv of a prototypical Health 2.0 group, the Periodic Paralysis Association, asked the doctors associated with the listserv to write what they called an “Owner’s Manual” for hypokalemic periodic paralysis (http://www.uni-ulm.de/fileadmin/website_uni_ulm/med.inst.040/Dokumente/owner.html), a prototypical information therapy type of resource. The patients used the listserv to collect a set of questions for which they wanted answers, both for their own education and to educate physicians caring for them. Yet, the patients made very clear that they wanted the responses – that is, the content – to be written by people whom they, and their physicians, could trust as experts. Far from guarding their realm as a patient–patient self-empowerment organization, the patients encouraged two doctors to participate in the listserv, one motivated by a research interest in the area and the other motivated by having one of the diseases himself. This ability to add doctor–patient interactions and mix Health 2.0 and information therapy shows how some of the rigid conceptions of the types of medical information on the Internet are evolving into more flexible approaches better at meeting the needs of patients.

An interesting aspect of online discussions is their propensity to mix fact and opinion. This theme is not new; indeed, in published papers we are quite wary of such mixing and carefully separate results from discussion. However, we also recognize that mixing fact and hypothesis is crucial to the advancement of science. Indeed, such mixing of fact and opinion constitutes one of the advantages of being in a top medical center and being exposed to new approaches before they are well established. Although there is some potential for wrong ideas spreading, the process tends to be self-correcting to a remarkable degree, even in patient–patient discussions, as documented by Dan Hoch and Tom Ferguson in a study of interactions on their Brain Talk communities (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1182328/). However, despite the advantages of allowing juxtaposition of fact and opinion, boundaries often need to be clarified. Numerous unfounded opinions regarding disease cause and treatment, presented as fact, clutter the Internet and are often accepted by patients, Our personal impression is that, as the Internet has become more widely used for medical information, we are spending progressively more time addressing these groundless beliefs when seeing patients. Ultimately, one still needs the more formal validations of traditional published articles and controlled studies to validate ideas and screen out nonsense, although participation of physicians in online communities can serve to disseminate knowledge to counter mistaken beliefs.

Discussion groups have important decisions to make about who is allowed to participate or view the content. There is clearly a role for groups that are closed to viewing by non-doctors. This is the approach taken by the Child-Neuro listserv, and many patients agree to have their cases discussed on the listserv precisely because of this standard of professional privacy. Many patient–patient sites, in contrast, are open to the general public, and searchable using search engines, providing the openness that allows patients to find one other.

The discussions described above involve groups of patients, groups of doctors, and sometimes a few doctors and many patients. Yet, in medical practice, a different type of exchange predominates – discussions about one patient in a clinical chart. With only a bit of exaggeration, one could characterize an electronic health record (EHR) as a privacy-protected blog about one patient. The comparison seems a bit whimsical because EHRs have become very complex and sometimes impenetrably boring. One doctor related that the checkbox style of clinical documentation and the resulting flood of automated verbiage in many EHRs results in output that could include documentation such as “child has no head” – without anyone noticing that signal obscured by the noise (http://www.nytimes.com/2009/03/06/opinion/06coben.html)! In contrast, the free-ranging discussion on blogs and other discussion formats is much more similar to a traditional patient record, in which one gets to the point and describes the essence of what people should know about a patient, and then documents and elaborates on the decision-making process. Despite the simplicity of blogs, they have the ability to incorporate a wide variety of types of external content, and in many senses blogs are closer to the doctor view of a clinical record than are many EHRs.

There is much discussion about automating some types of doctor–patient interactions using e-mail and telemedicine. This is most extensively implemented so far in radiology, where the subtleties of patient interaction are largely absent and reimbursement issues are most clearly defined. It is widely expected that such techniques will expand. Although dedicated telemedicine systems already exist, many psychiatrists are currently using the quick and simple option of using Skype (http://www.skype.com/) for patient sessions, despite the potential risks to privacy. Over the years, it is expected that telemedicine will increase, driven by provisions for reimbursement for such situations and a proliferation of more secure options for such online interactions.

On a more basic level, many patients already are using e-mail to communicate with their physicians. Electronic communication between patients and health-care providers is advantageous, in that the communications can be thought out carefully in advance, posted and read at convenient times, and saved for future reference and for the medical record. Supplemental information can be attached or linked. “Asynchronous communication” also avoids “phone tag,” long telephone queues and holds, and long-distance phone charges, a difficulty for many patients. However, the use of e-mail to convey sensitive information raises numerous security and privacy concerns, particularly given the legal right of employers to access their employees’ e-mail. Also, many physician offices are not set up to triage e-mails as efficiently as they do phone calls. A potential solution to many of the problems posed by e-mail lies in the development of comprehensive, password-protected patient portals for doctor–patient interaction, such as Hello Health (http://www.hellohealth.com/) and similar approaches (http://www.aan.com/globals/axon/assets/5870.pdf).

One of the emerging themes in EHRs is patient empowerment through use of personalized health records. There are obvious advantages to patients having access to their full record, but there are some situations, particularly in psychiatry, where having material hidden from the patient and some other doctors is wise. Currently, many doctors, even outside psychiatry, are reluctant to have patients see their charts, out of concern that their ability to be candid would be reduced, and also out of fear that innocent abbreviations, such as the acronym for “shortness of breath,” might be misinterpreted by a patient. However, there are situations in which the opposite is the case, and the record could benefit from additional material and corrective comments added by the patient. Such material could be structured as annotations or comments by the patient, and could result in collection of other information that is helpful but did not occur to the patient while seeing the doctor. However, there are many issues that need to be worked out, such as reimbursing doctors for reviewing such information and following up on it. Until such issues are solved, many such useful interactions will fail to occur.