Internet Communications for an International Study of Schistosomiasis

Epidemiologic studies of participants in international sporting events pose informatics and communication challenges.  For an international study of schistosomiasis (a parasitic disease transmitted in contaminated freshwater sources), we enrolled 150 individuals from 22 countries who had been white water kayaking or rafting in Uganda, Africa. At enrollment in Uganda, we recorded exposure information using an interviewer-administered questionnaire and took a blood sample to test for schistosome antibodies.  Three months after enrollment, we asked individuals to self-complete another exposure questionnaire covering the intervening period.

 

This study presented several major communications challenges.  First, we needed to follow-up individuals residing in several countries throughout Africa, Europe, North America, Asia and Australia.  Second, many participants had no postal address, either because they lived in countries with no reliable postal system or were traveling for extended periods of time.  Third, because a positive laboratory test result indicated that a participant should consult a healthcare provider about treatment for schistosomiasis, we needed to send the results to them quickly.  Fourth, we needed to ensure that sharing laboratory test results and collecting other patient identifiable data was done securely.  Fifth, we had to develop a solution in a short time frame and with a limited budget.

 

To meet these challenges, we created three Internet interfaces using SPSS Dimensions software.  Two packages were used to report laboratory test results back to individuals and a third was used to collect data from individuals using an on-line self-completion questionnaire. Special security arrangements were implemented to protect study participants’ personal and clinical information and to meet the different technical specifications of internet browsers. We found that this approach greatly facilitated our ability to rapidly and securely communicate with individuals in multiple countries.  Our approach may be useful for future investigations which require follow-up of widely dispersed populations.