Research using Online and Digital Tools

[Audio] While ethical guidelines and standards have yet to be established for Internetbased research, PHILIPPINE RESEARCH POLICIES AND SPECIAL GUIDELINES.

[Audio] Internet-based research method refers to any research method that uses the Internet to collect data. Most commonly, the Web has been used as the means for conducting the study, but e-mail has been used as well. When internet is used as a tool for conducting research Examples: online survey, subject recruitment, email or discussions/interviews, data mining Internet as a location or site for conducting research Examples: Collecting data about or observing online environments such as chatrooms, gaming sites, virtual worlds, social media video conferencing (Skype, Facetime), and use of "the Cloud" The use of e-mail to collect data dates back to the 1980s while the first uses of the Web to collect data started in the mid-1990s. Whereas e-mail is principally limited to survey and questionnaire methodology, the Web, with its ability to use media, has the ability to execute full experiments and implement a wide variety of research methods. The use of the Internet offers new opportunities for access to participants allowing for larger and more diverse samples. However, this new access to participants comes at the cost of a great deal of loss of control of the research environment..

[Audio] Online and digital tools provide a relatively new platform for health-related research. Next. They present several opportunities, but also raise ethical issues, especially in the informed consent process. Next. Ambiguity in the determination of risk arises from the minimal interaction between the researcher and the participant. In Internet research, there is little means of gauging participant characteristics (e.g., age), and how participants are responding to the study. There have been some major discussions of the ethics of Web-based research. In particular, the lack of contact between the investigator and participant means that it is more difficult to ensure that the nature of the study is understood. In addition, there is no way to be sure that any participant is debriefed rendering the use of deception particularly problematic on the Web. However, on the positive side, participants do feel very free tom leave the study at any time, meaning that it can be more clearly assumed that the sample is truly voluntary, free of the social constraints that keep many participants in laboratory experiments when they wish to leave..

Capture data in real time. Paperless data collection.

[Audio] No direct contact with participants Validate individuals: inclusion/exclusion criteria Validate integrity of the data (e.g. - falsifications/multiple submissions) Inability to assist individual(s) if they become distressed Data security.

[Audio] Just placing a study on the Web is not usually sufficient to get an adequately large sample to analyze. It is typical to advertise the study. There are several methods of study advertising that are used. One way is to advertise on sites and Another common method is to solicit participants from discussion groups or e-mail listservs. Because these groups tend to be formed to discuss common issues, this method allows access to subpopulations that might be of interest. With the advent of social networking on the Web, social networking sites such as Facebook have also been used to recruit participants. It should be noted that the Web is not a monolithic entity. Different methods of recruitment will lead to different samples. Depending on the sample needs of the study, it is often advisable to use multiple types of recruitment methods. One enticing feature of the Web as a research environment is the ability to obtain more diverse samples. Samples are more diverse on the Web than the comparable sample in the laboratory. However, that is not to say that the samples are truly representative. Web use is not even distributed across all population segments. One of the big concerns in Web-based research is the ease with which participants can leave the studyParticipants in Web-based research regularly do not complete a study, leaving the researcher with several incomplete data sets. Incomplete data can make up to 40% of a data set in some studies..

[Audio] In addition, there are issues that are associated with data and personal privacy, and access that are inherent in most Internet activities. While ethical guidelines and standards have yet to be established for Internetbased research, researchers shall be mindful of these issues, and consider current best practices to safeguard the rights of participants and protect them from harm..

[Audio] Is it "reasonable" to ensure privacy? Investigators can't promise expectation of privacy when social networks are involved (FB, Tweeter, Chat rooms) – Privacy settings (Terms of Service) always changing Technical: Spyware, keystroke monitoring, video camera - Password protection doesn't automatically ensure privacy Can participant's identity be readily ascertained through limited datasets? Username, alias, e-mails, IP address, partial identifiers (e.g. gender, DOB, race).

[Audio] How will participants be recruited?  How can the requirements for informed consent be fulfilled?  Are the individuals identifiable or anonymous? (note that "online identity", even if a pseudonym, may already be attached to an individual's real identity)  Is the online behavior "public" or do respondents have reasonable expectations of privacy?  Did individuals know or expect that records were being kept (versus ephemeral or impermanent data)? Guide Questions To Ensure That Respondents' Right To Privacy And Confidentiality Is Upheld.

[Audio] researchers may need to take specific measures to inform the respondents and obtain their consent to use their data for research, with the attendant protections to their rights to privacy..

[Audio] Soliciting the participation of minors shall be done with extreme care, given that the researcher is unable to verify the age of the respondent, and shall include strategies for checking and ensuring parental consent. Internet research involving minors should be limited to minimal risk research..

[Audio] Additional safeguards for maintaining privacy and confidentiality of information shall be used (e.g., pseudonyms, modified quotes to prevent immediate retrieval through search engines, encryption, separation of data files for identifiers and responses)..

[Audio] The study team shall include a member who is familiar with technical issues concerning Internet security, including additional safeguards..

REFERENCES. Salkind, Neil J., editor. Encyclopedia of Research Design. Thousand Oaks, CA: SAGE Publications, Inc., 2010. SAGE Knowledge, 16 Nov 2022, doi : https://dx.doi.org/10.4135/9781412961288 . National Ethical Guidelines for Health and Health-related Research 2017.

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