News and Insights

Digital afterlife: Your health data after you’re gone

June 9, 2025

My watch tracks my steps and heart rate as I grind through workouts. I have an app that monitors my menstrual cycle. Another records my monthly health parameters. I check them all at the end of every month, hoping to see progress and feeling a bit proud when I do. However, what if I am gone tomorrow?

Where will all these data go? Will they be stored with these organizations? Deleted forever? Used for medical research? There are many questions regarding not just the data we feed our phones, but the troves of health data that care providers and centers collect. For marketers, communicators, healthcare providers, and even patients themselves, this presents an urgent ethical and strategic question: what happens to our digital health footprint after death? And, more importantly, who decides?

This is not only a legal and privacy issue; it’s a human one. It is about respecting lives lived, stories told, and data trails left behind. It’s about guiding brands to treat even posthumous health data with sensitivity, integrity, and foresight.

This is where communicators can play a pivotal role. By shaping narratives that prioritize empathy, advocating for responsible data use, and helping brands navigate the delicate intersection of ethics, legacy, and technology, we communicators can ethically and responsibly develop posthumous data policies that respect patients and their families in the future.

The digital afterlife

Today, a person’s digital health footprint is vast, fragmented, and deeply personal. It includes:

• Electronic medical and health records (EMRs/EHRs): Containing everything from lab results to clinical notes, these are the backbone of modern healthcare. As of 2021, 96% of hospitals in the US adopted a certified EHR system.
• Telemedicine session data: Accelerated by COVID-19, virtual care now leaves behind rich audio, video, and metadata about patient-provider interactions.
• Health and fitness apps: Apps like MyFitnessPal, Flo, and Headspace track everything from calorie intake to mental health habits.
• Wearables and trackers: Nearly one in three Americans use wearables like Fitbit or Apple Watch, creating continuous streams of biometrics.
• DNA testing platforms: Companies like 23andMe and AncestryDNA not only collect genetic data but retain rights to store, share, and even monetize it.
• Searches and forums: Searches of symptoms or participation in online communities (e.g., Reddit’s r/Health) are also part of this footprint, often stored in ways the user may not realize.

What ties all these data together is volume and vulnerability. Health data is among the most sensitive categories of personal information. In the US, under the Health Insurance Portability and Accountability Act (HIPAA), health information remains protected for 50 years after death. During that time, only authorised individuals or next of kin can request access, and even then, it must be justified.

But HIPAA only covers data held by healthcare providers and insurance companies—not smart watches or menstrual tracking apps. These fall outside federal health privacy laws and are governed by general data protection policies, often buried in long user agreements. In other words, once you are gone, what happens to that data depends on the app’s policy and whether your family can access your accounts.

Here’s where the legal and ethical waters get murky. Once a person dies, who owns their data? Legally, EHRs often belong to providers. Data from apps and wearables usually belongs to the company, governed by terms of service. Families are often left in the dark. There are few standardized pathways for next-of-kin to retrieve or manage a deceased relative’s health data. For example, Apple allows designated legacy contacts limited access, but most platforms have no such tools.

What can we do?

As experts at the intersection of health, tech, and communication, agencies can lead the way in responsible digital legacy management. Agencies should advocate principled, respectful data practices. That means collaborating with providers and tech platforms to develop messaging that considers the data of deceased users. It also requires setting guidelines for campaign usage, especially when real patients’ stories are used posthumously.

Now, deceased individuals may remain part of brand narratives with testimonials or patient success stories. Agencies must develop clear protocols for permission and legacy consent and ensure all messaging honours the subject’s dignity and family wishes.

Agencies can also consult on crafting data posthumous policies with healthcare clients. We can advise families on digital directives and data retrieval options and/or shape memorialization experiences that integrate health data (e.g., digital time capsules or medical journey archives).

Building a respectful health data ecosystem

Now is the time for communicators to act. AI-driven diagnostics, predictive analytics, and data-hungry startups are only growing. Without action, deceased patients may unwittingly become part of datasets or narratives without permission or awareness. We propose a Digital Health Legacy Toolkit—a suite of agency services including:

• Health data directives: Tools and templates for patients to dictate data preferences post-death.
• Secure data vaults: Platforms where users can store their digital health information with pre-set access rules.
• Ethical use audits: Reviews of campaigns and AI systems to ensure respectful use of posthumous data.

This isn’t a job for healthcare alone. It requires collaboration between legal, tech, policy, and communication professionals, with agencies leading the charge in narrative and ethics.

We are entering an era where our stories, struggles, and statistics live on in data. The question isn’t whether we can use this information—it’s whether we should and how. Healthcare marketers and communicators must champion these tough conversations. Patients and families deserve transparency, control, and respect. We are ready to lead, advocate, and innovate. After all, digital health doesn’t end with death—and neither should our ethics.