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.

Authoritative Narrative Content

The classical types of authoritative narrative content are journals and textbooks. Such content will clearly continue, though increasingly it will arrive in electronic format. The degree to which the switch of such narrative material to electronic format has caused emergence of new “textbooks” has been remarkable, with UpToDate (http://www.uptodate.com/), for example, emerging as a new entrant in narrative content, leapfrogging past established textbooks.

Although narrative content was shaken up by the switch to electronic format, it is unlikely that there is a winner-take-all situation in electronic information, any more than there is such a dominance in the existing world of paper textbooks. For example, there is at least one type of distinction in content that will remain: content aimed at different types of doctors. Articles in UpToDate are aimed primarily at generalist doctors, and such doctors feel overwhelmed when a search of UpToDate comes up with a huge number of detailed articles about possible diagnoses. In contrast, a specialist will prefer such a level of detail, and be more drawn towards the level of coverage in a resource such as printed specialist textbooks or in online resources such as MedLink Neurology (http://www.medlink.com/). In many subspecialties, including child neurology as a whole, abundant narrative material is likely to find its own place as part of resources available on the Internet.

Already, child neurologists are used to having a variety of narrative resources on the Internet. GeneReviews (http://www.ncbi.nlm.nih.gov/sites/GeneTests/?db=GeneTests) and Orphanet (http://www.orpha.net/) provide excellent articles on genetic or rare conditions, and such resources are kept free through government grants or contracts. Other resources, such as OMIM (Online Mendelian Inheritance in Man; http://www.omim.org), provide material that is less digested but more comprehensive in covering a set of diseases beyond those for which a complete GeneReviews-level article can be commissioned. The free PubMed service (http://www.ncbi.nlm.nih.gov/pubmed/) of the National Library of Medicine provides abstracts and sometimes full text access to articles in all major journals. Resources such as OMIM and PubMed are so widely used that a Google search for a 6-digit OMIM number or an 8-digit PubMed number will typically find the item as the first search result.

Other online resources provide detailed information at the level of subspecialties. Notable is Alan Pestronk’s neuromuscular disease site (http://neuromuscular.wustl.edu/), with detailed and comprehensive information that compares favorably with other sites in the neuromuscular area.

Other providers of content include professional societies, which often take the lead in developing clinical guidelines. Notable in this regard has been the American Academy of Neurology, which has used its professional authority to issues consensus positions on many difficult practice questions (http://www.aan.com/go/practice/guidelines).

The existing diversity of valued narrative resources suggests that we will continue to have a diversity of narrative resources as such content moves to electronic format. However, the changeover is likely to involve many changes in the details of how information is aggregated and presented.

Content for patients is more likely to use videos, and not just for situations such as seizures, in which video is crucial for understanding the phenomena. One example of this trend towards video is the Phytube videos (http://phytube.com/MedicationVideos/tabid/62/Default.aspx) to educate patients on the details about prescription drugs.

Wikis

Wikis are a type of Web content with no real analog in the pre-computer age. A wiki is a document that can be edited independently by many people using a simple set of Web page formatting tags. The prototypical and dominant wiki is the collection called Wikipedia, produced by a non-profit foundation with a for-profit arm.

The advantage of Wikipedia is that the wide participation has resulted in millions of pages of content, with many popular articles having material contributed by many different authors, none of whom is paid. The disadvantage of Wikipedia is that there can be backwaters in which the information is false or misleading, and battles can erupt over controversial issues, with information added, deleted, or even locked down for improper reasons.

In medicine, a key concern about Wikipedia is that articles are often written by people who are not medical professionals, sometimes resulting in content that is dubious or very incomplete. Although Wikipedia has articles on thousands of diseases, many physicians will prefer wikis with authorship restricted to doctors. One such effort specific to child neurology is the Miami Child Neuro Wiki (https://braininstitute.mch.com/wiki/Category:Public). A more general resource with participation of several major academic medical centers is Medpedia (http://www.medpedia.com/). One problem with authoritative wikis is the difficulty of getting content – as of july 2011, over two years after it started Medpedia has only 303 articles listed under neurology, and typically the articles are very brief.

As with traditional narrative content, a promising future direction for wikis is finding some way of getting doctors and patients “on the same page,” such as by encouraging doctors to write some of the content on sites which patients are authorized to author, or giving preferential editing privileges to doctors. As discussed above in the context of Web forums, there is much value to such doctor–patient collaboration, particularly for unusual diseases in which a doctor is unlikely to have seen many patients, and where the patient perspective adds much to the doctor’s knowledge. Also, it is particularly useful to have a doctor who has a particular disease write material that combines both the doctor’s and patient’s perspectives, resulting in a full understanding that comes from living with the disease from both perspectives. One excellent example is an article, “Practical aspects in the management of hypokalemic periodic paralysis,” by Dr. Jacob O. Levitt, a dermatologist who has this disorder (http://www.translational-medicine.com/content/6/1/18).

As with Internet forums, the chief difficulty in achieving the desired doctor–patient collaboration is creating financial and professional models for inducing the doctor to write patient-directed material. Due to the value of such material, it seems likely that this will be achieved, but it remains to be seen what combination of subscription, sponsorship, or support from advertisements or grants will finance such sites, and what combination of payment, research interest, credit for academic advancement, personal relationships, or public spiritedness will be the most successful approach to getting doctors involved in such patient-directed materials.

In the introduction to this section we stressed the newness of the wiki approach, but in some senses medicine is already familiar with the concept of such collaborative authorship in a patient record, where we long have had collaborative editing of a problem list and a patient’s orders or medications.

Diagnostic Decision Support

The basic difficulty with diagnosis is that medical information is typically organized by disease, yet the process of diagnosis is one of beginning with a collection of findings and considering diseases that could have these findings. Some of the resources for diagnostic decision support, such as flow charts and diagnosis confirmation protocols, existed long before computers. These approaches are very useful in situations in which a particularly salient finding is present or a particular diagnosis is being considered. However, for the more general case, we now have access to novel approaches to decision support that did not exist in the pre-computer age, and can improve both diagnostic accuracy and cost-effectiveness of work-ups. These new approaches include automated search and diagnostic software.

The advantage of automated search is the ability to process huge amounts of information collected in an inexpensive, automated process of searching accessible Web pages (e.g., Google; http://www.google.com/) or adding some natural language processing (e.g., Isabel; http://www.isabelhealthcare.com/). The disadvantage of search is that many of the subtleties of the information are lost or jumbled, including information about timing and onset, absent findings, frequency of findings, and treatability. There are many subtleties to how we think about findings in a disease that are lost in a search-type approach, but can be used in a diagnostic software approach (e.g., SimulConsult; http://www.simulconsult.com/). As an example, in some situations, one would consider orthostatic changes in blood pressure to be a necessary finding in order to suggest a disease, but in other cases, one would consider that orthostatic changes could be incidental. Another advantage of the diagnostic software approach is the ability to list the detailed information about findings in diseases in such a way that it can be displayed to doctors and modified in a wiki-like way with peer review.

Another advantage of diagnostic software is the ability to offer advice on what findings or laboratory tests would be most useful and cost-effective in distinguishing among likely diagnoses. This is an improvement over the sort of generic checklists that produce outputs with low readability, and can produce documentation that emphasizes the pertinent positives and pertinent negatives important in the particular case. Also, diagnostic software is able to provide an objective measure of cost-effectiveness of diagnostic tests for an individual patient, constituting an important way of getting doctors and insurers to focus on evidence relevant to decisions about whether a test should be covered by insurance. Linking such capabilities with resources such as the GeneTests (http://www.genetests.org/) lists of laboratories that offer particular genetic tests allows clinicians to move rapidly from physical findings to identifying, authorizing, and ordering relevant laboratory tests.

One area in which doctors need help is in interpreting genetic tests. Increasingly, we face situations in which a mutation is found in a gene or an abnormality is found on a chromosomal test, but it is not clear whether the result is pathogenic or incidental. Sites such the DECIPHER database (http://decipher.sanger.ac.uk/), which provide such genomic information, will be important tools for providing perspective about such test results.

Treatment Decision Support

Treatment is a more straightforward problem than diagnosis because one already knows the diagnosis and can use narrative text, calculators, and flow charts to help with treatment if the disease is unfamiliar, or if fine-tuned management is needed. Even when the disease is familiar, integration of computer programs into the workflow can increase safety and improve outcomes.

Examples of free-standing or integrated applications include calculators (such as automated anticoagulation calculators), drug information and interactions, flowcharts, look-up tables, nomograms, and automated guidelines and protocols (e.g., an online ordering system that might recommend deep vein thrombosis prophylaxis in an adult in bed for longer than 2 days, or a patient-controlled anesthesia pump that puts an upper limit on the amount of morphine infused).

Perhaps the most useful recent advance in treatment decision-making has been the ability of groups of health-care professionals to address specific treatment questions, review the medical literature, and make these systematic reviews widely and easily available via the Internet (http://en.wikipedia.org/wiki/Systematic_review). The best-known collection is the Cochrane Database of Systematic Reviews section of the Cochrane Library (http://www.cochrane.org/reviews/). Yet, even when clear recommendations have been formulated, they often are not used [McGlynn et al., 2003]. Why is this the case?

First, even when guidelines exist, it takes extra effort for the practitioner to look for them and remember to use them. However, “guideline execution engines” are being developed to address this issue; these are programs integrated into EHRs that translate clinical guidelines into recommendations (http://en.wikipedia.org/wiki/Guideline_execution_engine). Examples might include alerts about drug interactions and dosage errors, disease management pathways (e.g., reminders to obtain surveillance laboratory tests in patients on certain medications, or renal ultrasounds in patients with tuberous sclerosis), and automatic retrieval of relevant systematic reviews. A meta-analysis of clinical decision support systems for treatment or screening revealed that 68 percent of these support systems improved clinical practice, and that the only ones that did so were those in which decision support was automatically supplied to the clinicians as part of their normal workflow; none of the support systems in which clinicians were required to seek out the help of the support system improved clinical practice [Kawamoto et al., 2005]. Other features associated with improvement in clinical practice for treatment and screening were:

Some 94 percent of clinical support systems that incorporated these key features were associated with improvement in clinical practice. Paper-based clinical guidelines do not have the impact of guidelines that are integrated into a clinical management system.

The second reason why these clinical protocols are not used is that there are so few of them, and even the ones we have are based on limited information and often do not give definitive guidance. For example, the American Academy of Neurology and Child Neurology society have a total of only ten treatment guidelines for child neurology (some shared) on their websites (http://www.aan.com/practice/guidelines/index.cfm and http://www.childneurologysociety.org/resources/practice-parameters, accessed 4 July, 2011). Moreover, guidelines frequently do not exist for, or apply to, the individual patient in front of us and the specific clinical question being asked [Gronseth and French, 2008]. The patient in front of us is not the “average patient” addressed in the study. Establishing recommendations can be very difficult [e.g., Smeets et al., 1999], particularly when many of the diseases we see are rare. We are hopeful that, as medical records are digitized, medical information will become more easily abstracted, coded, and shared, aiding generation of better information about diseases, treatments, and outcomes.

Interoperability

Since integration into workflow is so important, there has been much emphasis on interoperability, the ability of systems to exchange information and use the shared information. There are two important aspects of interoperability of medical information: interoperability among various information resources, and interoperability between information resources and EHRs. Our sense is that interoperability among information resources will happen more quickly, since it is far simpler to do.

There are several different types of information resources, reflecting different styles of thinking. Doctors tend to jump among several styles of thinking in the process of diagnosis or treatment, and value having easy links to widely used tools such as OMIM entries and GeneReviews articles. Accordingly, linkage between information resources is likely to become more prevalent, and any resource shunning such links will be considered less useful than other resources.

Doctors will want to jump among the following types of resources:

Narrative text (such as articles in the literature and textbooks)

Protocols:

Decision protocols for determining the best diagnosis or treatment (such as standard decision trees)

Confirmatory protocols for going from a proposed diagnosis to a confirmed diagnosis using clinical information or laboratory tests (such as nosologic tables – http://www.nosology.net/) and the British National Health Service testing criteria (http://www.ukgtn.nhs.uk/gtn/Information/Services/Testing_Criteria)

Decision support software:

Automated search

Diagnostic software

Images (e.g. VisualDx for dermatology; http://www.visualdx.com/), video, and audio. Eventually, such resources can be expected to include the ability to search for images similar to those of a particular patient.

Some interoperability among information resources can be created using straightforward links. For example, when using decision support software, and clicking on a disease, one will want links to narrative material about the disease or confirmatory protocols for verifying the diagnosis. Similarly, when clicking on a finding, one will want links to resources about the finding or figuring out which laboratory offers a DNA test. More novel are forms of interoperability that did not exist before the use of computers. For example, narrative resources typically offer a differential diagnosis section for a particular disease. However, this is a differential diagnosis for the disease as a whole, when one actually wants a differential diagnosis for an individual patient. As of December 2010, GeneReviews has been doing this by linking to SimulConsult from the differential diagnosis sections of new or updated of articles allowing a reader to click into a profile of the relevant disease, get a refined differential diagnosis, and then click back to narrative resources to read about a more relevant disease. Similarly, given recent advances in image analysis, we anticipate development of databases in which clinicians can search magnetic resonance images for scans similar to those of a particular patient.

Linking many such resources is straightforward, since each diagnosis, finding, or medication has established codes that can be used for interoperability, and the content in such information resources needs to be classified only once. Nevertheless, there is much work to be done in selecting resources and creating the environment in which one can jump from resource to resource.

Arranging the same interoperability with an EHR is less straightforward, since the interoperability will depend on the terminology used by a particular clinician, and on the judgments made in an automated way about which resources should be offered to assist but not pester the doctor. Despite such difficulties, interoperability with EHRs is an important goal to achieve. Methods of achieving such interoperability with EHRs include natural language processing and ways for a clinician to designate terms within the medical record for which additional information is desired. Coding systems to enable such interoperability include the SNOMED (http://www.nlm.nih.gov/research/umls/Snomed/snomed_main.html) and UMLS (http://www.nlm.nih.gov/research/umls/) efforts financed by the National Library of Medicine, and the terminology interfacing of IMO (http://www.e-imo.com/).

Integration of output resources will also be useful. An outpatient letter to a referring physician would be much more useful if an MRI image or a video could be included rather than simply featuring a description in words.

Education

Education is one of the areas likely to be transformed in major ways by computer technology. Many of the information resources discussed above, from narrative resources to wikis to decision support, are already being used in education. The ability of the Web to disseminate video is of huge importance to teaching areas of neurology that are very visual, such as movement disorders and epilepsy, and even the ability to provide many still images at low cost is very helpful for neurocutaneous diseases and neuroimaging. Such resources are useful in educating not only medical students and residents, but also generalists and neurologists in a just-in-time fashion when they need to recognize a particular disease or its findings. The ability of diagnostic decision-support software to highlight useful findings in an interoperable manner is crucial to enabling such just-in-time education.

Educational resources relevant to child neurology include the international Malformation Terminology systematization, which provides hundreds of Web pages with definitions and images to describe malformations of the head and extremities (http://research.nhgri.nih.gov/morphology/index.cgi). More at the student level for teaching the neurological examination are the collection of videos and sound clips at PediNeuroLogic Exam (http://library.med.utah.edu/pedineurologicexam/html/home_exam.html) and the videos at NeuroExam (http://www.neuroexam.com/). Each of these resources is available free on the Web, facilitating interoperability with other information resources.

The Web has also facilitated case-based education by allowing many training programs to share interesting clinical cases, providing the economies of scale to encourage top-quality presentations. The Child Neurology Society and the Professors of Child Neurology have been running such a program monthly since 2008 (http://www.childneurologysociety.org/education/casestudies), making use of the Web to include images, hyperlink the cases directly to articles in the literature and to diagnostic software, and even allow participants to submit information to the diagnostic software that changes the differential diagnosis seen by all participants.

Decision support software is also useful in teaching in a very concrete context how we approach differential diagnosis. Typically, medical students are taught to make diagnoses by collecting all relevant information, thinking about it, and constructing a differential diagnosis. In reality, the process is far more iterative [Bowen, 2006]. One collects a bit of information, forms hypotheses, and then collects more information based on the hypotheses, and continues in this manner, refining the differential diagnosis iteratively. Using diagnostic software, one can show this process in a very concrete way, and illustrate other factors that are important in diagnostic thinking, such as frequency of findings, treatability, and time information. Diagnosis turns out to be far more complex than the way it is presented in medical schools, and being able to demonstrate this in a very concrete fashion with diagnostic software makes it easier to convey these complexities to students.

A variety of other online educational tools exist. EMGWhiz (http://www.emgwhiz.com) is designed to teach and assess electrodiagnostic problem-solving skills. Libraries of disease-specific videos includes NOVEL, the Neuro-Ophthalmology Virtual Education Library (http://novel.utah.edu/NOVEL/), the Movement Disorder Virtual University by We Move (http://www.mdvu.org/), and videos on the “Neuroanatomy: draw it to know it” site (http://drawittoknowit.com/) teach anatomy by drawing. Eye Simulator (http://cim.ucdavis.edu/EyeRelease/Interface/TopFrame.htm) provides an eye movement and pupillary response simulator, along with a quiz mode. The adult neurology self-assessment examination, helpful for the required Maintenance of Certification section of the American Board of Psychiatry and Neurology’s lifelong learning component, is available online (https://www.aan.com/elibrary/continuum/index.cfm?event=moc.home), and the child neurology equivalent will be available on the Child Neurology Society website (http://www.childneurologysociety.org).

Dissemination of Original Research

It is not clear how long print versions of journals will last, because they offer little advantage over their online equivalents. The online journals offer inexpensive distribution and storage, and provide rapid accessibility via the Internet. The print versions offer the ability to have access when not connected to the Internet, but for online journals there is the workaround of saving copies for occasional offline use. Print versions also provide continued access to articles after receiving a particular issue, in contrast to access to electronic resources that typically disappears if one drops an electronic subscription to a journal, but this could be solved online by changes in access contracts. Furthermore, as more journals are covered by mandates in which content is made free after a set period following publication, the need for local print archives will become even less.

Although some high-quality, online-only journals have arisen (e.g. PLoS journals; http://www.plos.org/), to date the large majority of important papers are published in journals that had print versions from their inception. As leading journals begin to drop their print versions, new journals likely will then be started without ever including a print version. This may usher in an era in which the barriers to starting a journal become less formidable. As the publishing process becomes more of a commodity, we may see the editorial boards become far more important than the publisher in defining the stature of a journal. As the publishing environment changes further, the place in which an article is published may become less important, and editorial boards could become more similar to group blogs that draw attention to important articles, regardless of where they are published. It is unclear what economic model will make most sense in such an environment. If the essential value of the publication is the content submitted free by the authors and the value added by the review process, typically provided free by peer editors, we may see a move towards free journals.

One trend may be to have faster publication, perhaps akin to the process common in the field of economics, in which papers are published prior to editorial review and then modified on the basis of input wider than that of traditional peer review. A trend that would be most welcome would be an end to the over-terseness caused by the page limitations in some top journals. Instead of a need to conserve printed pages, the most important need is to reduce the time needed for a reader to read and digest the information.

Hardware

It is very difficult to predict the type of computer hardware that will be used in coming years, and it is beyond the scope of the chapter to go into such matters at length. Some trends, though, are clear. Doctors are very mobile, and will want some device they can carry, whether a small pocket phone or a white-coat pocket tablet, to be able to access information at different locations during the day. However, medicine is complicated, and using small devices for sophisticated purposes is like looking at the material through a keyhole, so cellphone-sized devices cannot meet all needs.

There are several issues about computer hardware that are particularly relevant for medical uses of computers. One issue is infection control, which will favor computers that can be decontaminated easily. Some hospitals deal with this issue by having computers at many fixed locations in hospitals, and disinfecting the mice and keyboards. Others hospitals deal with the issue by using mobile computers designed to be decontaminated easily, such as slate tablet computers.

Another way in which medicine differs from other environments is the human nature of the interactions. Patients find it very distancing for a doctor to be using a keyboard and looking away at a screen. As a result, many doctors have opted for tablet computers that can be used on a lap or a desk in the manner of using a pad of paper.

Perspectives

One of the big questions about computerization in medicine is whether the new medium will change the type of medical information we use. For new tools, such as diagnostic software, the use of the tool at all is a real change. But the wider question is how traditional narrative material will be changed by the Internet. Will we move away from authoritative sources and towards a social networking approach in which information is amplified by the community of users? The examples discussed in this chapter suggest that both doctors and patients want some mix of certification and social networking approaches, and the successful resources will be those that manage to merge these to combine the solidity of expertise with the nimbleness of a vigorous community. Such an approach has long been the spirit of medicine, with researcher-initiated journal articles and investigator-initiated research, mixing the dynamism of the community with the considered opinion of leaders in the field.

It seems clear that more and more of our information will be on the Internet, and new approaches to information will become common. One of the major changes to expect in the near future is a rapid move towards interoperability among information resources, jumping not only from software to narrative resources, but also from narrative resources to software to obtain advice tailored to an individual patient.

Conflict of Interest

Dr. Segal is the founder of SimulConsult. He acknowledges that his interest in promoting use of the software poses a potential conflict of interest.

References

The complete list of references for this chapter is available online at www.expertconsult.com.

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