Impact evaluation teams (or research teams) often work with, or have access to, datasets that contain sensitive or personal identifiable information (PII) on individuals. They can either have direct access (for instance, through a field survey), or indirect access to this data (for instance, in the form of call data records (CDR)). In both cases, it is important to ensure that research teams act ethically. Broadly, ethical research means that research teams must obtain necessary approvals, protect human subjects, obtain informed consent, and ensure confidentiality. This also means that the research team should clearly think about, and be transparent about ownership of the data they use. Research ethics ensure that that steps taken to reach the outcomes of a study are just as important as the outcomes themselves, and help improve the validity of results of a study. Note that Research Ethics and data security go hand-in-hand. Show
Read FirstProtecting Human SubjectsMembers of the research team must ensure that they protect human research subjects and their rights, including the right to privacy. In this context, all living individuals whose sensitive or personally identifiable information (PII) is contained in the datasets being used in the study are considered human subjects. Therefore, ethical research requires that all members of the research team who handle personally identifiable information (PII) must have up-to-date human research subjects certification. Two organizations that offer courses to certify research team members are: Note: It does not matter whether the research team has direct, or indirect access to the data. If the dataset being used in the study contains personally identifiable information (PII) about individuals, then research team must protect the right to privacy of every such individual. Right to privacy includes ensuring confidentiality, privacy, and anonymity of study participants. Ethics ApprovalsInstitutional review boards (IRBs) are organizations that review and monitor research studies to protect the rights of human subjects. The research team must obtain IRB approvals for studies that use personally identifiable information. This is a powerful tool to promote ethical research because IRBs can deny research teams the right to use data if they do not follow proper guidelines while handling the data. Note: Keep the following points in mind with respect to ethics approvals:
Informed ConsentBefore collecting personal data from any individual involved in a research study, the research team must obtain informed consent from each individual. This means that the research team must clearly mention all possible risks and benefits from participating in a study, either for the survey pilot or as a respondent in the actual survey. This is done through an informed consent module conducted at the start of a survey interview. Note: Keep the following points in mind regarding informed consent:
ConfidentialityThe research team must also ensure complete anonymity and confidentiality. This means that the identity of study participants should remain hidden, and sensitive information of individuals should never be shared with anyone outside the research team. Research team members should be held personally liable for any actions that result in disclosure of sensitive and personal data. Note: Keep the following points in mind regarding confidentiality and anonymity of study participants:
Other Aspects of Ethical ResearchTransparencyOne of the most common concerns in research is the possibility of research teams manipulating the results of a study before publishing it in a journal. This is called publication bias, and can waste precious time and money. In order to make results of a study more transparent, the research team can pre-register their study with a registry. Some of the common registries are: However, while ensuring transparency, research teams must not forget concerns about privacy of participants. Therefore, the research team must make sure that they do not disclose or publish personally identifiable information (PII) or confidential data, and should encrypt all such data as soon as they receive it from the field teams, or an external organisation. ReproducibilityReproducible research is the system of documenting and publishing results of an impact evaluation. At the very least, reproducibility allows other researchers to analyze the same data to get the same results as the original study, which strengthens the conclusions of the original study. It is important to push researchers towards publishing reproducible research because the path to research findings is just as important as the findings themselves. DIME Analytics has also drafted the DIME Research Reproducibility Standards, which lists guidelines for ensuring reproducibility of research. Data securityData security is another important aspect of responsible research. The research team must ensure that members of the research team who are not listed by the IRB can not access any confidential data. Data can be confidential for multiple reasons, but the most common reason is that it contains personally identifiable information (PII). Other reasons include that the data was shared under a data usage license that requires the data to be kept confidential. The most important aspect of data security is encryption. DIME Analytics has drafted the DIME Data Security Policy, which lists guidelines for ensuring data security during research. Data publication is the release of data and data documentation following data collection and analysis. It also involves de-identifying sensitive, or personal information before publication, and ensures that research is both ethical, as well as reproducible. While de-identifying, the research team must store an encrypted version of the original raw data which includes personal identifiers like names, addresses, location, etc. It is also important to keep in mind the risks associated with data publication, such as concerns about right to privacy of human subjects. DIME Analytics has drafted the DIME Data Publication Standards, which lists guidelines for data publication. Finally, the research team must also think about data ownership through a set of clear rules for use of research data. What is the best way to maintain confidentiality in a research study quizlet?Confidentiality of survey. Research protects participants confidentiality in several ways: Obtaining signed nondisclosure documents Restricting access to participant identification Revealing participant information only with written consent Restricting access to data instruments where the participant is identified.
What is an appropriate method for maintaining confidentiality of private information obtained from human subjects?What is an appropriate method for maintaining confidentiality of private information obtained from human subjects? Keeping data in a password-protected database. Storing data in a secured cabinet. Coding data or specimens and keeping the key to the code in a separate location.
Why is confidentiality important in research?The convention of confidentiality is upheld as a means to protect the privacy of all persons, to build trust and rapport with study participants, and to maintain ethical standards and the integrity of the research process (Baez, 2002).
What are some safeguards she could use to protect subject privacy and data confidentiality?Guidelines for data confidentiality. Encrypt sensitive files. ... . Manage data access. ... . Physically secure devices and paper documents. ... . Securely dispose of data, devices, and paper records. ... . Manage data acquisition. ... . Manage data utilization. ... . Manage devices.. |