Why patient engagement is essential for healthcare data use

Executive summary

The secondary use of healthcare data can accelerate research, improve public health, and unlock powerful Real-World Data insights. Yet as data from EHRs, insurers, and genomics becomes increasingly interconnected, ethical concerns about privacy and re-identification grow. We advocate for a consent-driven approach grounded in patient engagement, transparency, and GDPR-level governance. By securing explicit permission and providing robust oversight, we build trust with patients and data partners, enabling richer, longitudinal datasets that meaningfully advance drug development and global healthcare innovation.

Key insights

• Secondary use of health data offers major value but raises privacy and ethics challenges tied to re-identification risks.
• BC Platforms promotes direct patient engagement and explicit consent as core principles of trustworthy Real-World Data research.
• GDPR’s consent-based model enables greater transparency and stronger patient trust compared to the US commercial data ecosystem.
• Rich, consented datasets accelerate drug development by revealing deeper insights into patient outcomes.
• As global regulation intensifies, transparent governance and patient permission become essential for sustainable RWD collaboration.

The secondary use of healthcare data brings enormous value — from improving efficiency and expanding disease knowledge to supporting public health priorities like pandemic detection. Yet it also raises profound ethical questions, especially as patient information is reused in ways few could have imagined.

In the digital era, the health data analytics industry weaves together comprehensive profiles using data from electronic health records, prescriptions, insurers, and even genomic information. While much of this data is de-identified, it can often be re-identified when cross-matched with other datasets. Just a few data points — gender, birth month or year, and postal code — can reveal a person’s identity.

Because of this, BC Platforms advocates for direct patient engagement and explicit consent in Real-World Data (RWD) research — not only because it is ethically sound, but because it strengthens data integrity and accelerates collaboration. Our Global Data Partner Network is built on this principle: patients willing to share their data securely to support better healthcare for all.

Why healthcare entities sell data

In the US, de-identified healthcare data can be sold to third parties not explicitly covered by HIPAA. Once in the commercial ecosystem, these datasets are frequently linked with other sources to enable predictive analytics.

For many healthcare entities, selling de-identified data has become an accessible source of revenue — often without patient engagement or clear opt-in mechanisms.

European healthcare systems, guided by the General Data Protection Regulation (GDPR), already operate on a consent-based framework. Patients can see how their data is used and withdraw consent at any time, establishing trust and transparency. As a result, researchers benefit from richer datasets — longitudinal and genomic — that provide a far deeper understanding of patient outcomes than anonymous data alone. Hurskainen adds:

The more Real-World Data drug developers have at their disposal, the faster they can discover new medications to treat  unmet medical needs. With combined genomic and longitudinal clinical data, drug developers can quickly learn about what makes some patients recover and others not. The insights gained from RWD can save years from the R&D process.

Building trust through engagement and governance

More regulation in the US is inevitable due to growing patient concerns. There are a wide array of new rules and legislation: CMS and ONC’s voluminous proposed rules on interoperability, data blocking and patient access, Europe’s General Data Protection Regulation (GDPR), and the California Consumer Privacy Act. 

One of the key differentiators of BC Platforms is that it works under the strictest framework—GDPR- to meet global data privacy and security requirements. BC Platforms’ Data Partners recognize the commitment to data privacy and this trust allows BC Platforms to engage new partners and scale RWD access globally. Says Hurskainen,

The industry is moving in the direction of direct patient engagement, transparency in data usage and well-designed data security measures.  Given the depth of RWD insights required by drug developers, it is imperative we engage patients in the discussion on data usage.

He concludes:

If [companies] want to have real world data and do public and private collaborations and research, it starts with getting the patient’s permission. That opens the door for important research and findings that can benefit all.