Digital health tools promise convenient access to health information and services. But many operate on a business model that depends on harvesting user data.
As more and more of us turn to digital health to support our wellbeing, we asked our members: Where’s the line between acceptable data use and exploitation when patients get “free” digital health tools?
Here’s what they had to say.
Morven Shearlaw, director, Fearsome
Digital Health Data consent is such an important question and one we don’t ask enough.
When patients get “free” digital health tools, their data often becomes the price. The difference between use and exploitation is trust.
Using anonymised data to improve care, support research, or make apps safer? Great. Selling or sharing it without clear consent? Not okay.
People deserve to know exactly what they’re giving and what they get in return.
Theresa Neil, founder, Guidea
Good product design and engineering respects customer data, is built for data privacy & data security per global data protection standards, clearly asks customers to opt into sharing data for research, and doesn’t share sensitive information for profit.
Companies like Talkspace, Clue, and Oura are currently good models of consumer wellness products committed to keeping sensitive data private and secure.
We have laws in place in Europe and the US to protect patient data for a reason.
Consumer wellness apps that collect consumer medical information (patient data): symptoms, cycles, meds, biometrics, are walking a very fine line if they skirt regulations to keep this data private and secure.
Selling that data is unethical as well as illegal in many cases and more companies are paying a penalty for their actions, like Flo Health’s recent US$8m settlement fund for allegedly sharing sensitive data with Meta.
Dr Anita Phung, research physician and medical monitor, Lindus Health
The line? Building trust through transparency. When digital health tools clearly communicate data use and genuinely benefit patients, they create partnerships rather than transactions.
Here’s what excites me: digital health is finally opening doors closed to women for decades.
We can track hormonal patterns, monitor historically dismissed conditions and participate in research from home. These tools are dismantling barriers that kept women underserved by medicine and excluded from clinical trials.
The key is ensuring innovation serves women rather than extracting value from them.
When companies prioritise transparent practices and meaningful consent, these tools become transformative. The future of women’s health is digital and that’s genuinely exciting.
Dr Harry Thirkettle, Director of Health Innovation at Aire Logic
For me, the line is ownership and informed consent.
People aren’t really getting ‘free’ tools, they’re paying with their data, so they should be crystal clear about how and why it will be used, in plain English, and always have a simple way to say no.
If I couldn’t explain the data use to a patient in a clinic room and have them still feel comfortable, we shouldn’t be doing it in an app. That’s how we build trust and guard against exploitation.
We need to confront this head-on. It’s about building services with a real purpose that deliver better outcomes for patients, rather than just making money off their information.
Real innovation means building with safety, trust and inclusivity in mind from the very start, so patients can have confidence in the system and the tools they are using.
Nadine Carey-Whitehead, Commercial Director, Insource
The NHS holds an extraordinary dataset, and none of the ambitions of the 10-Year Health Plan will succeed without data and intelligence working in the background.
Acceptable use means data enables care, not exploitation. The line is crossed when information is monetised or used beyond patient benefit without transparency and consent.
Robust governance and clear consent processes are essential to maintain trust.
Crucially, patients should understand the benefits of sharing their data – such as quicker diagnoses, personalised treatments, and improved access to services.
When people see how data drives better outcomes for them, confidence grows and innovation can thrive.
Samantha Fay, CEO, SiSU Health
The line between acceptable data use and exploitation is defined by purpose and transparency.
In a prevention-first NHS, data should empower people to stay healthy and informed.
At SiSU Health, being driven by data means using evidence to build trust and deliver measurable outcomes.
People stay in control of their information, which is used only to support their health and help systems target risk, reduce inequalities and improve outcomes.
When digital tools and medical devices are trusted and underpinned with compliance and accessibility, they strengthen confidence and that is essential to delivering better health for every community.
Wolfgang Hackl, CEO, OncoGenomX Inc.
Growing evidence shows that “free” digital health tools walk a fine line between empowering patients and exploiting them.
Acceptable data use is transparent, proportionate, and genuinely beneficial, giving users clear control and protecting them from downstream harms.
Exploitation arises when companies harvest sensitive data opaquely, repurpose it for advertising or risk scoring, or capture disproportionate value without returning benefits to patients or society.
As business models increasingly rely on engagement and data extraction rather than health outcomes, strong governance, purpose-bound access, and equitable value-sharing are essential to maintain trust and ensure digital health serves the public good.
