A View of the Future of Child Neurology
Verne Caviness, M.D., D. Phil.
Massachusetts General Hospital and Harvard Medical School, Boston
Child Neurology in the years ahead will build in its many facets upon Child Neurology in our time At is core will be its authority in all matters relating to the developing human nervous system, an authority that places special emphasis upon disorders of the nervous system of the child. This authority will be represented primarily by that larger community of child neurologists whose concern is service to the child, their families and their colleagues in other domains of child medicine. Our foundation in clinical service and clinical knowledge will continue to nourish our authority, enabling the clinician to know more, to do more and to do better what is already done. This process will not go forward easily. For the clinician, practice modes and the tools available in practice are transforming rapidly and each change will require a new adaptation. There will be inevitable tensions inherent in such transformations and adaptations and these tensions will have their place in the "background overhead costs" in our professional lives.
For the investigator the slope of change and adaptation may be even more transforming and I wish to enter a somewhat larger set of reflections in this camp. The mode of operation in investigations is changing at a blinding rate. This reflects importantly the massive rate at which information is being logged in and the rate at which the tools for investigative work are arising and changing. Even these considerations, as large as they are, must be viewed as only the first order realities in the preparation and career of the investigator, however. Much larger in its implications for Child Neurology and its investigative community is a gathering radicle overhaul of the entire culture of investigation into which the investigator is being drawn. The vital engine of this overhaul I will call "communalization. " By this I draw attention to the emergence as axial to all processes of discovery and implementation of discovery the workings of large, complexly networked teams. Within these teams separate skills and inputs complement such that the whole is much greater than the components.
A glance at our publications or a sampling of what comes before us at meetings suffices to illustrate the pervasiveness of this transformation. Thus, a study of a heritable disorder will begin at the bedside or the clinic but fans out along lines of interaction with cell and molecular biologists. The study of behavior may begin in the clinic but will enlarge with the contributions of cognitive scientists and imaging specialists. The architecture of such networks and their "interactivity" are not to be imagined as "off the shelf" realities that "hum along" with inevitable uniform standards of performance. On the contrary, enormous tensions arise from large gaps in the competence of such networks - gaps related to how they are conceptualized, how they operate and the efficiency with which they achieve or fail to achieve their objectives. It is not at all in a critical sense that I enter this perspective. Rather I do so to emphasize the enormous requirements of strategic and tactical thinking and planning that must be central to all investigations in child neurology.
The need but also the opportunity in this regard are vast. The scope is far larger than this treatment. Suffice it for present purposes to draw attention to gaps where our networks need much but for the present have relatively little. These are in the domains of informatics, of MR or CT image analysis and of data management. Let us reflect first of all upon the clay feet of informatics. Thus, the patients who come into our practices or our hospitals may be the beneficiaries of intensive and costly analysis with compilation for each in ad hoc fashion of a remarkable pool of information. However, with the acute problem passed, the footprint of this information fades rapidly, forming at some level only a trace element of the experiential growth of one or a few clinicians. For the present, we have no workable tools for extracting, ordering critically, conserving and recycling the information inherent in this process. With respect to imaging, the instruments at our disposal implicitly generate orders of magnitude more data and information than we utilize and could utilize. In principle clinical readings note only pattern or signal intensity abnormalities with essentially nothing harvested in the quantitative domains - a vast and essentially unexplored resource for our struggle with disease. With respect to data management, it is only exceptionally that the clinician is able to extract laboratory values, prior observations or demographic data by other than some laborious and time costly process. Whereas our positions in each of these domains are for the present awkward and limping, great energy and imagination are being poured into their betterment and done so at many institutions. Where will such effort take us? Perhaps, it will lead to institutions where information from the clinical analyses is continuously placed in an analytic frame, where automated quantitative image analysis goes forward in real time, where universal greatly flexible representational data bases absorb the harvest from both clinical and image analysis and update what we know, the judgements we make and what we do in real time. This is a distant vision. But partial successes, achieved independently in any of these areas, will be real gains.