Participant Data Policy and Disclosure

Our Commitment

Our Cancer Stories is a project undertaken by a team of academics and researchers from the National University of Singapore’s (NUS) Global Asia Institute (GAI). We are committed to accurately recounting the real experiences of cancer patients and survivors, while protecting their privacy and personal information.

We fully respect the privacy of all patients who have participated in our study (‘Participants’) as approved by the National University of Singapore’s Institutional Review Board (NUS IRB), and commit to upholding data privacy and integrity. All data and privacy matters are outlined to Participants in the Participant Information Sheet, which is provided at the start of the survey.

NUS IRB code: NUS-IRB-2023-320

This policy and disclaimer was last reviewed on 13 August 2024. For any information on this policy, please contact hello@ourcancerstories.com.

Data Policy

Our Cancer Stories takes a novel approach in how an individual’s experience with cancer is represented. Participants are invited to share their experience through a comprehensive survey. The research team adopts the following protocol to ensure veracity and representativeness of the survey data.

  1. Upon receiving the data, researchers employ a series of data quality checks to ensure that the responses received are from genuine patients and not from bots or spam.
  2. Upon completing data quality checks, the Participant’s identifiable information is anonymized. The remaining non-identifiable information is used to craft a structured narrative. Each narrative is aimed at providing readers with useful information to make informed decisions, as well as comfort and solidarity.
  3. While AI-assisted software may be used to help craft the structured narrative, our writers ensure that the narrative closely aligns with the original survey response to maintain integrity and representativeness. If required, the story will be sent to the Participant for verification to further ensure accuracy in recounting his/her experience.
  4. Finally, the story will be published on Our Cancer Stories in English. Note that we do not publish full names of Participants to ensure anonymity and confidentiality.

Any Participant who no longer wishes to share their story may have it removed upon request. Only completed survey responses are stored for use, and information from incomplete surveys is discarded. Data is stored on a secure database accessible only by the research team.

Participant Privacy

The Participant’s identifiable information such as full name and email address will not be published on the website, and are used only for the research team to communicate directly with the Participant when required.

Any information that can be used to identify the Participant is accessible only by the research team. All personally identifiable information will be deleted from storage upon completion of the study, unless the Participant has expressed interest in participating in future research, upon NUS-IRB approval. All personally identifiable data is kept strictly confidential, and not published in any way or form.

The Participant’s identity is kept anonymous in the published story as well; the name used in each story will follow the Participant’s indicated preference of either using his/her first name or a pseudonym.

Disclaimer

The views expressed in each story are solely that of the Participant and do not necessarily reflect the views of Our Cancer Stories, Global Asia Institute, National University of Singapore or other associated parties.

The medical information provided is not a substitute for professional medical advice, diagnosis, or treatment. The information is provided for informational or educational purposes only.