CoNE launches 'My Data, Our Health' campaign
Source: The Sangai Express

Imphal, November 03 2026: With a call for protection of people's rights, privacy and control over personal health data, the Community Network for Empowerment (CoNE), Mani- pur has launched "My Data Our Health��Your Health Data, Your Rights, Your Voice" campaign at Manipur Press Club here today.

The campaign is a global initiative led by Transform Health to raise awareness about people's rights over their personal health data and promote equitable, people-centred health data governance.

CoNE launches 'My Data, Our Health' campaign

Manipur State AIDS Control Society (MSACS) Project Director Arambam Anna attended the launch function as chief guest which was participated by representatives of civil society organisations, community networks, health professionals, development part- ners and other stakeholders.

Speaking at the gathering CoNE general secretary RK Nalinikanta said that every time a person accesses a health facility, undergoes a test, receives treatment or uses a digital health service, personal health information is generated and collected but many people remain unaware of what information is being collected, where it is stored, who has access to it, how it is shared and how it is protected.

For CoNE, this issue has a direct connection with the lived experiences of communities that often face stigma, discrimination and barriers to healthcare.

People who use drugs and other marginalised communities may be particularly vulnerable when personal health information, including information about HIV status, treatment or other health conditions, is disclosed or used without appropriate safeguards, he said.

Fear of disclosure and discrimination can undermine trust in healthcare services and discourage people from seeking testing, treatment and care, Nalinikanta said.

He asserted that health data protection is fundamentally about people's rights, dignity, safety and trust.

Individuals should be able to access information about their own health, understand how it is being used and exercise their rights without fear of stigma or discrimination, he said.

The campaign comes at an important time as India moves towards implementing the Digital Personal Data Protection Act, 2023 and the Digital Personal Data Protection Rules, 2025 .

While the framework provides for transparency, consent, individual rights, grievance redressal and data security, greater public awareness and effective implementation are needed to ensure that these protections are understood and applied in the health sector, the CoNE general secretary said.

CoNE emphasised that the benefits of digital health and the use of health data for research, planning and public health must go hand in hand with strong safeguards for privacy, confidentiality, accountability and non-discrimination.

The rights and interests of people whose data is being collected must remain central to these processes.

As a part of the campaign, CoNE will work with community-based organisations, networks of people who use drugs, civil society groups, youth networks and other stakeholders to take the conversation to communities.

The campaign will encourage people to ask a simple but important question: "Where's My Data?", Nalinikanta said.

Saying that the campaign will run from November 3 to December 15, 2026, the CoNE general secretary invited community organisations, health professionals, civil society groups, youth networks, media professionals and social media content creators to join the initiative and help spread awareness.

He also called upon all stakeholders to work together towards a health system where digital progress respects human rights, protects confidentiality and leaves no community behind.