Healthcare data is very sensitive. Patient medical records hold personal details and clinical information like diagnoses, treatments, imaging results, and genetic data. There are strict laws in the United States, like HIPAA (Health Insurance Portability and Accountability Act), that require health institutions to keep this information private and confidential.
AI systems need large amounts of data to work well. In healthcare, this means lots of patient information. Many healthcare AI tools and research projects use data from hospitals and clinics. But sharing or collecting this personal data in one place causes problems:
When private tech companies collect sensitive health data, it raises more concerns. For example, some partnerships between tech firms and hospitals have faced criticism for not having enough patient consent or privacy protections. Experts say that current methods to hide patient identity may no longer be enough, which challenges how patient privacy is kept safe.
Generative data models are types of AI that learn patterns from existing datasets. They then create new data that looks like real data but does not copy any real patient information. This new information is called synthetic data.
In healthcare, synthetic data can be used to:
A review of recent studies showed that most synthetic data in healthcare is created using deep learning methods, about 72.6% of the time. These methods usually use programming languages like Python, which has many AI tools available.
Synthetic patient data offers several important benefits for medical practice managers and IT staff:
Synthetic data does not link directly to any real person. Since it is made-up but follows real patterns, it helps protect privacy and meets strict rules like HIPAA. Johns Hopkins researchers made an AI system called DREAM that uses large language models to create synthetic patient messages. This system makes realistic but privacy-safe patient data to train AI without using real patient information.
Using synthetic data means researchers and developers do not have to ask for real patient data, which can be slow and complicated legally. This speeds up the creation and testing of AI while lowering paperwork and delays.
Synthetic data can be designed to better represent groups that are less visible in real data. This helps reduce biases in AI healthcare tools. Real data can show social and racial inequalities, so synthetic data must be created carefully. For example, one study found that synthetic messages made for Black or African American patients had less polite language and less accurate medical details. Using specific AI prompts can help fix these biases.
Open-source collections of synthetic data tools let many groups like universities, tech companies, and hospitals work together. This lowers the need to access private patient data for research and development.
Synthetic data is useful for privacy, but other methods help too. These often work together:
Synthetic data and generative models help not just in training AI but also in improving clinical workflow. AI can help with front-office and administrative tasks in healthcare.
A company called Simbo AI uses AI to handle phone calls and scheduling between health providers and patients. AI automation can:
Using synthetic patient messages makes it easier to train the AI for these tasks. It also reduces privacy concerns because real patient messages are not used. The Johns Hopkins DREAM system shows how synthetic data can help AI better understand patient communication.
In US healthcare, using AI means careful focus on privacy, rules, and efficiency. Here are some important points:
Synthetic data helps protect privacy but is not perfect. Studies show AI can still identify up to 85.6% of people from data thought to be anonymous. This means:
Using synthetic data together with methods like federated learning and other privacy tools can reduce risks better.
Researchers continue to improve synthetic data, focusing on:
Open-source tools and research encourage cooperation so healthcare groups can safely create and check AI models.
Using generative data models and synthetic patient data in AI offers an extra layer of privacy protection. This helps medical managers and IT teams keep patient trust while improving healthcare and office work.
Healthcare AI adoption faces challenges such as patient data access, use, and control by private entities, risks of privacy breaches, and reidentification of anonymized data. These challenges complicate protecting patient information due to AI’s opacity and the large data volumes required.
Commercialization often places patient data under private company control, which introduces competing goals like monetization. Public–private partnerships can result in poor privacy protections and reduced patient agency, necessitating stronger oversight and safeguards.
The ‘black box’ problem refers to AI algorithms whose decision-making processes are opaque to humans, making it difficult for clinicians to understand or supervise healthcare AI outputs, raising ethical and regulatory concerns.
Healthcare AI’s dynamic, self-improving nature and data dependencies differ from traditional technologies, requiring tailored regulations emphasizing patient consent, data jurisdiction, and ongoing monitoring to manage risks effectively.
Advanced algorithms can reverse anonymization by linking datasets or exploiting metadata, allowing reidentification of individuals, even from supposedly de-identified health data, heightening privacy risks.
Generative models create synthetic, realistic patient data unlinked to real individuals, enabling AI training without ongoing use of actual patient data, thus reducing privacy risks though initial real data is needed to develop these models.
Low public trust in tech companies’ data security (only 31% confidence) and willingness to share data with them (11%) compared to physicians (72%) can slow AI adoption and increase scrutiny or litigation risks.
Patient data transferred between jurisdictions during AI deployments may be subject to varying legal protections, raising concerns about unauthorized use, data sovereignty, and complicating regulatory compliance.
Emphasizing patient agency through informed consent and rights to data withdrawal ensures ethical use of health data, fosters trust, and aligns AI deployment with legal and ethical frameworks safeguarding individual autonomy.
Systemic oversight of big data health research, obligatory cooperation structures ensuring data protection, legally binding contracts delineating liabilities, and adoption of advanced anonymization techniques are essential to safeguard privacy in commercial AI use.