Background to the Genetic Counselling Database

A hospital department in Oxford, UK, has a genetic counselling unit. Here patients and their relatives donate a blood sample that is tested for a life-threatening genetic condition, i.e. one that is inherited through generations of a family.

The job of the Genetic Counsellor is to meet with all members of the family to explain both the testing procedure and, subsequently, the results of testing.  In addition, blood samples must be tracked through the testing process to minimize the waiting time for results.  The database must therefore reflect the work of the Genetic Counsellor and facilitate the daily processes. 

The database must store patient contact details, appointments, decisions, the genetic condition in the family, the tests to be performed on each individual and, crucially, the results.  Also, the database must deliver daily a report listing items to be followed-up: for example, those individuals for whom the samples have not yet been received, those individuals for whom the test results are awaited and those individuals who need an appointment.

The database must also serve the needs of the hospital department, which are different from those of the Genetic Counsellors.  The time-to-testing and the time-to-result are two important aspects of hospital administration.  Similarly, it is useful to identify families that may be of interest for future medical research into other inherited disorders.

With this workflow and these aims in mind, we developed the database, which is summarised below.

Features

The database opens directly onto the Contact Screen and all operations occur from that focus.  Database navigation occurs via a toolbar, that is part of the Contact Screen.

The Contact Screen is divided into 3 tabs reflecting the modular design of the database.  Modules may be added or subtracted from this database, depending on user requirements.  One tab (General) contains contact details and general information, another contains the genetic test information with results (Tests) and a third shows contact events (Events).  The last may be summarised into 30-, 60- and 90- day 'overdue for follow-up' categories.

A quick glance at the Test  tab will indicate whether the individual has tested positively (+) or negatively (-).  Similarly, if the Events tab has the happy face symbol it indicates that no follow-up is due or overdue, whereas an unhappy face indicates that immediate action is required.

Often the Genetic Counsellor would begin with a search to find a particular family or member of a family.  Consequently, the database provides facilities to enable simple or complicated searches based on any combination of information for an individual (e.g. last name, date of birth, test result, contact event, etc.).  

In the Reports Screen, the reports facility plays a major part in the administration of this Oxford hospital department.

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