With the enactment of the Data Privacy Act of 2012, the Philippines has entered a new era of human subject protection. Yet, not fully understood is the new law’s impact on human-subjects research that primarily processes personal data. For developing countries like the Philippines, a robust Research and Development Sector is essential in achieving national development goals. It is, therefore, important to aid Filipino researchers working in the health and allied health sciences, in social research, and in other fields, as they deal with an increasingly complex regulatory environment for dealing with people who are simultaneously human subjects and data subjects.
To this end, the Project proposes a twofold solution:
The Development of a custom Data Privacy Toolkit for Research Involving Human Participants. Employing the toolkit approach, the Project aims to adequately address research-specific issues and concerns regarding privacy. It aims to do so through a series of participatory action research workshops across the country that will uncover issues and concerns relating to the impact of the Data Privacy Act on research. Specifically developed for and driven by the researchers themselves, such a Toolkit will offer practical guidance to Filipino researchers and ethics review committees in coping with the regulatory challenges of the new law and enable them to better protect the privacy rights of human subjects.
Deployment of an Online Course on Data Privacy in Research. In addition to the Toolkit, the Project seeks to develop an open-access, asynchronous online course for results dissemination, awareness-building, and greater outreach to more researchers, research educational institutions, and other stakeholders whose work is impacted by the new privacy regulations. Given the Project’s broad national coverage, online courses transcend geographical constraints to dissemination. While an online course cannot replace a full research ethics training in data privacy, it would be a good complement to face-to-face training in future ethics interventions.
Development of Data Privacy Toolkit for Research
In this Project, we propose to employ a toolkit approach to address issues in conducting research under the new privacy regulations. Here, a ‘toolkit’ refers to a set of tools put together for a particular purpose. Such an approach emphasizes the deployment and provision of ‘tools’, or the means to solve otherwise complex problems with uncertain outcomes. It seeks to suggest a demonstrable resolution of conflicts and competing interests and the promotion of initial common understanding, enough to engage actors and stakeholders and help them solve problems at hand.
To develop the Toolkit, the Project uses a participatory action research (PAR) methodology that relies on workshops as a platform of interaction among subject-matter experts. PAR is a social science research paradigm that “emphasizes collaborative participation of trained researchers as well as local communities in producing knowledge directly relevant to the stakeholder community” (Coghlan and Brydon-Miller, 2014: 583).
The workshops provide the necessary contextual knowledge to the Privacy Toolkit. They drive the framing and applicability of the Toolkit in research involving human subjects. While the Privacy Toolkit has minimums as regulatory requirements, its actual contents are contingent on inputs from research practitioners and institutions who, ultimately, bear the responsibility in implementing data privacy in their diverse contexts. The workshops help determine the contents of the Privacy Toolkit. In a parallel vein, the data privacy law encourages reflection and accounting of contextual issues of regulations. Here the workshops are an important mechanism for bringing to the fore otherwise “hidden” privacy concerns in research human subjects.
Workshops and Their ParticipantsThe Project Team will be inviting scholars with relevant expertise to provide briefs and presentations on key topics in privacy and research, as well as other researchers and stakeholders (e.g., Philippine Health Research Ethics Board, Commission on Higher Education). The said scholars will be recruited from the three major island groups of the nation: Luzon, Visayas, and Mindanao. Endorsements or recommendations from research institutions, funders, reviewers may also be sought to get better substantive representation from diverse groups.
A workshop helps drive subsequent workshops. Outputs from one workshop would be used as inputs to subsequent workshops. Communication with workshop participants include requests for verification, clarifications, validations, comments. Sets of transcripts and qualitative data are to be analyzed; they will inform subsequent activities. The process is iterative and data-driven.
In collaboration with local partners, a total of 6 workshops will be held in Mindanao, Visayas, and Luzon.