Factors Influencing Adherence to Data Protection Guidelines among Researchers at the Kenya Medical Research Institute

Background A study conducted in Kenya between January and June 2014 showed that one of the important challenges facing researchers in public health data sharing is the risk to the interests of study participants. Exposure of participant’s data can lead to stigmatization, loss of privacy, and unfair competition. Data loss can be through the form of intentional and unintentional 'misuse' of data. This study sought to determine the factors influencing adherence to the data protection guidelines among the researchers at KEMRI, Kenya: the national body responsible for carrying out health research in Kenya. Objective The study sought to determine the individual and organizational factors influencing adherence to the data protection guidelines among health researchers in KEMRI, Kenya. Methods This study was conducted among health researchers at the Kenya Medical Research Institute in Nairobi, Kilifi, Kisumu, and Busia Counties, Kenya. This was a quantitative cross-sectional study design involving 141 health researchers. Stratified sampling method was used to obtain the representative sample of the whole population. Questionnaires were administered to the selected KEMRI researchers. A total of nine questions extracted from the NACOSTI guidelines were asked. A respondent was considered to have adhered if he/she has agreed to all the nine questions. A p-value of <0.05 was considered statistically significant. Results The significant individual factors that influences adherence to the national data protection guidelines among KEMRI researchers are common forms in which data may leak to unintended persons/places (p-value of 0.04) and research stages (p-value of 0.03). The availability of guidelines or policies on data protection within the institute is the organizational factor which highly influences adherence to data protection with a p-value of 0.01 (this shows that it is highly significant). Institutional Ethics Review Boards (IRB) and Data Safety & Monitoring Boards (DSMBs) clearly do not play a critical role in data protection in health research with a p-value of 0.77(this shows that it is highly insignificant). Conclusion These results imply that both the individual and organizational factors influence adherence to the data protection guidelines among health researchers.