Adherence to Data Protection Guidelines among Health Researchers at Kenya Medical Research Institute

Abstract

Researchers are expected to keep participants’ data in a highly confidential and private manner. A study conducted in Kenya in 2014 revealed that the research stakeholders face different challenges relating to the sharing of public health data. The exposure of data occurs through stigmatization, invasion of privacy, disrespecting autonomy and unfair competition either intentionally or unintentional 'misuse' of data. The general research objective of this study was to examine the adherence to the data protection guidelines in health research in KEMRI, Kenya. Cross-sectional study design was used and it employed quantitative methods of data collection and analysis. The sample size for this study was 128 research participants, however an extra 10% was added to cover for non-respondence. The study targeted the KEMRI’s scientists who have participated in any research project. Stratified sampling method and the “Probability Proportional to Size” (PPS) was used to get the desired sample in each of the KEMRI center. The data analysis was done using SPSS Version 23. Descriptive statistics and chi-square test were done to determine significant association and results presented in tables, graphs and charts. A total of nine questions were asked to determine the adherence to the national guidelines. A respondent is considered to have adhered if he/she has agreed to all the 9 items. The neutral respondents were considered as non-adherence. The findings reveal that 18 (12.6%) of the respondents adhered to data protection guidelines in health research while the majority did not adhere 121 (87.4%). P-values <0.05 were considered significant. Results further showed that guidelines or policies on data protection within the institute are the organizational factor which highly influences adherence to data protection (p-value of 0.01). Restricting access to the authorized persons and use of codes to conceal participant’s identity (p-value of 0.04) are the best ways of protecting health research data. In conclusion, most researchers do not comply with all aspects of national guidelines on data protection which may lead to the exposure and leakage of participant’s data. In view of the findings, the researcher recommends the creation of awareness through workshops and trainings as well as the development of institutional guidelines as the best ways of adhering to data protection guidelines.