In today’s healthcare landscape, the dual pressures of transparency and privacy are front and centre. Organisations like Hallmark Health and CareFortis aim to empower patients with clearer insight into their care journeys — yet the very notion of data sharing triggers anxiety. Patients want the light on, but they don’t want every detail exposed. That tension is what I call the “privacy paradox”.
The openness demand
On one side of the coin: patients overwhelmingly support sharing data with their care teams. A 2024 study found that over 95% of patients were willing to share all of their medical information with their treating physicians. PMC At CareFortis, for example, remote-monitoring programmes hinge on patients consenting to share vital signs and activity data so care managers can intervene early. The transparency here is a win: better monitoring, fewer readmissions, more personalised care.
This desire for transparency also extends to healthcare organisations. Hallmark Health has publicly committed to making care-quality metrics available to patients, showing outcome data, patient satisfaction scores and cost metrics. This kind of openness builds trust — patients feel seen, informed, and in partnership with their providers.
The fear of sharing beyond the circle
Yet, flip the coin: when it comes to sharing beyond the immediate care team, things change. Patients worry about who gets the data, for what purpose, and how securely — especially as systems become increasingly interconnected, and as analytics, AI and third-party vendor services proliferate.
For instance, the federal government’s own analysis notes that linking datasets across health, human services and other agencies can drive efficiency — but introduces risks. ASPE Meanwhile, studies show healthcare organisations are still struggling with data governance and consistent frameworks for timely data exchange. HHS Not surprisingly, when patients hear that their data may be shared beyond their clinician — to a vendor, a partner, a research repository — the flip from “willing” to “hesitant” occurs quickly.
From Hallmark’s perspective: they want to share aggregate outcome data publicly ( → transparency ), but if patient-level data is even projected for research use, you see reluctance — from both patients and internal stakeholders. At CareFortis, the promise of remote monitoring is immense, but enabling external partnerships means reinforcing consent mechanisms and explaining “who sees what, when”.
What drives the paradox?
Two key dynamics are in play:
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Trust and control: Patients will share data when they feel in control and trust the recipient. The 2024 research supports this: when sharing is clearly with the treating physician, nearly all patients agree. But this drops when the recipient shifts.
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Opaque operational models: When organisations talk about sharing data “for research” or “for population health”, the language can sound generic and ambiguous. Without context, patients ask: “Will my insurance company use this? Will a vendor monetise it? Will I be identified somehow?” And because healthcare systems (including Hallmark and CareFortis) often built legacy infrastructures, the operational path — who has access, how it’s used, how it’s protected — isn’t always clearly visible to patients.
How organisations can bridge the gap
To resolve this paradox, healthcare leaders must pair transparency with trust-building mechanisms:
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Explicit consent practices: CareFortis implemented modular consent workflows: patients explicitly opt-in for remote monitoring, data aggregation, and third-party research. They are shown who will access the data, when, and how it will be used.
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Clear data-sharing dashboards for patients: Hallmark introduced a “data access log” in their patient portal — patients can see “where your data went”, “who accessed it”, and “why”. This builds operational transparency.
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Segmented sharing models: Separate “care delivery sharing” from “secondary use sharing”. Patients often support care-delivery sharing (with their clinician, care team), but balk at secondary uses unless they’re clearly defined, optional, and well-governed.
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Robust governance & oversight: Key for both Hallmark and CareFortis has been investing in a governance team — auditing data flows, tracking vendors, reviewing policy, ensuring third parties comply with HIPAA, and updating security protocols (especially relevant since new rules around algorithm-transparency are being finalised in 2024). Federal Register
Why this matters for growth, outcomes & reputation
When a provider nails the balance between transparency and privacy, the payoff is high. Patients feel deeper engagement, adherence goes up, outcomes improve, and brand reputation strengthens. Hallmark’s shift to visible data-sharing has translated into higher patient satisfaction scores and stronger loyalty. CareFortis has seen remote-monitoring adherence climb when patients trust how their data is used and shared.
Conversely, mis-handling the paradox carries real risk — data breaches, regulatory fines, loss of trust, and disengaged patients. The 2024 systematic review of personal health-data breaches highlights how even a single event “can undermine trust and frazzle willingness to share” future data. ScienceDirect
The takeaway
If you’re leading in healthcare — whether at Hallmark, CareFortis or beyond — here’s what you need to keep front-of-mind:
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Patients want transparency and control. You can’t give one without the other.
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Data-sharing isn’t just a technical challenge; it’s a trust challenge. Your tech may be fine, but if patients don’t understand “who, why, how”, you’re stuck.
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Operationalise transparency: make access logs visible, make sharing options clear, treat secondary uses as optional and explainable.
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Build your governance before you scale your sharing. Retrofitting governance after the fact rarely works.
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Ultimately: the fastest path to “value from data” is to first unlock patient trust.
In the end, the privacy paradox isn’t a contradiction — it’s a mis-alignment. When patients see exactly how, where and why their data travels, they’ll be comfortable sharing. And that’s when transparency and data-driven care can truly coexist. For both Hallmark and CareFortis — and for any healthcare organisation heading into digital-first care — solving this paradox isn’t optional. It’s foundational.
