by Jacobs and others, emphasized the desire that focus also remain on or return to the quality of life of those individuals currently experiencing symptoms. One participant highlighted the current gap in communications, noting that how information is provided on the Internet can vary, with implications for how those to whom it is disseminated (e.g., schools, insurance companies) will respond to the disease. The same participant called for a centralized source of information on the latest research to facilitate patient/family efforts to obtain such information. Another participant called for better communication between patients and their physicians, noting the damaging effect of this disconnection between two groups who have worked together on other illnesses. By working together in creative ways, physicians and patients may help to advance the science and understanding of the disease processes and chronic manifestations to permit earlier diagnosis and better treatment outcomes.
Participants also expressed concern about the underuse of the current population of patients and families as a rich data source in terms of bioinformatics, and perhaps a biorepository, to advance research into tick-borne diseases and the efficacy of various treatments. Weintraub responded that retrospective assessment of patients would be informative, but that it is important to move forward as well. She noted the availability of new tools to advance the diagnosis of infection and understanding of the pathophysiology of the diseases. It is important to look at what clinicians treating Lyme disease are doing, but to do so in the context of the new technologies. The goal is to move toward a definitive diagnostic tool and targeted treatment. Weintraub counseled that if the diseases can be diagnosed definitively in their earliest stage and treated effectively, then the occurrence of chronic, persistent symptoms will be eliminated or greatly reduced.