Privacy Policy

Last Updated: December 22, 2025

Welcome to the ACT-HN Survivorship Portal. This application is designed to support the research study titled "Understanding Survivorship Challenges in Head and Neck Cancer Patients in the Active Follow-up Period". We are committed to protecting your privacy and ensuring the security of the sensitive information you share with us.

This Privacy Policy explains how we collect, use, disclose, and safeguard patient information collected through the ACT-HN Survivorship Portal and complete the Survivorship Questionnaire.

1. Information We Collect

We collect specific categories of data to assess quality of life and survivorship challenges. This includes:

  • Demographic Data: Age, gender, place of residence, education level, occupation, and marital status.
  • Medical & Health Data: Time since treatment, new health problems (e.g., hypothyroidism), and physical symptoms.
  • Habit & Lifestyle Data: History of tobacco and alcohol use (past and present), duration of use, and family habits.
  • Financial Information: Household income, insurance status, out-of-pocket expenses, and details regarding financial assistance or debt related to treatment.
  • Quality of Life Data: Responses regarding your functional health, oral health (e.g., dry mouth, speech issues), emotional well-being (e.g., anxiety, fear of recurrence), and social interactions.

2. How We Use Your Information

The data collected is used strictly for research and clinical improvement purposes, including:

  • Analyzing the physical, emotional, and financial impact of head and neck cancer treatment 1–3 years post-therapy.
  • Identifying unmet needs in patient care and service delivery.
  • Developing better support systems, rehabilitation programs, and financial guidance for future patients.
  • Contacting you for follow-up care if specific health concerns are flagged in your responses (only if you have consented to follow-up contact).

3. Data Anonymity and Confidentiality

  • De-identification: All data used for statistical analysis and publication will be de-identified. Your name and direct identifiers will be removed from the dataset used for research reporting.
  • Access Control: Access to your raw data is restricted to authorized principal investigators, clinicians, and research staff directly involved in the ACT-HN study.

4. Data Sharing and Disclosure

We do not sell, trade, or rent your personal information to third parties. We may share data only in the following circumstances:

  • Ethics Committee & Regulatory Bodies: As required for research auditing and compliance.
  • Legal Requirements: If required to do so by law or in response to valid requests by public authorities.

5. Data Security

We use administrative, technical, and physical security measures to help protect your personal information. The data is stored in a secure database with strict access controls. However, please be aware that no electronic transmission over the internet or information storage technology can be guaranteed to be 100% secure.

6. Your Rights

As a participant in this study, you have the right to:

  • Access: Request a copy of the data we hold about you.
  • Correction: Request corrections to any inaccurate or incomplete data.
  • Withdrawal: Withdraw your participation from the study at any time.

7. Contact Us

If you have questions about this Privacy Policy or the data we hold about you, please contact the Principal Investigator or the Study Coordinator:

Department: Surgical Oncology / Head and Neck Service
Institution: ACTREC / Tata Memorial Centre
Email: snair@actrec.gov.in