CCTOS:  Data Collection for Statistics

• Issues:
  • Misunderstandings are frequent.  There are 2 very valuable groups of objectives, but be aware that they may require different strategies:
    • ( A ) Surveys for scientific and management goals: 
      
      • Historically the first application did focus more or less exclusively on this type of objectives.
    • ( B ) Patient care:
      • Individual patient care application were developed at a later stage.
        
• Approaches:
  • ( A ) Surveys:
    • Information must here be made anonymous as far as possible.
    • Detailed information from groups of more or less similar cases need to be reduced and summarised in classes, by means of standard codes as the "IDC" from the WHO.  What matter here here is conclusions about large populations, within acceptable error margins.
      
    • The current classifications focus on final academic diagnoses, but more attention should be devoted to "Health Issues".  From a management point of view "Health Issues" may require resources, even when a suspected diagnose has been eventually excluded.
      
    • Many healthcare professionals are not motivated for surveys and would need incentives before participating seriously in surveys.
    • The registration of classifications and codes should be made very easy.  As far as possible the information should be automatically derived from the clinical practice. In many obvious cases the user would only have to give one validation click on the proposed classification.
    • Anonymous information could also be used for quality control purposes.
  • ( B ) Patient care:
    • Reliable patient identifications are here critical.
    • Detailed information is here absolutely necessary in order to arrive at meaningful decisions.  "Clinical Modifiers" are essential, as degree of belief, acquisition reliability, intensity, frequency, duration, laterality, etc...  In clinical practice these important aspects are usually communicated in free text, or even by means of movements and voice tones. 
      
    • In telemedicine the challenge is now to make all these important information available to partners in the Care Team, who may be at remote locations.  The challenge is to achieve more reliable clinical information sharing, while keeping the system easy to use.  The most important clinical modifiers should begin to be normalized, while free text comment should remain possible everywhere.