Guest post from SPM member Adrian Gropper, MD of HealthURL.com.

Information is the foundation for patient engagement. Nothing about me without me. Although personal medical information starts out with your various institutions and doctors, it doesn’t just stay with them. The information moves and collects in secondary locations such as insurers (claims), public health agencies (vaccinations), online health records (Microsoft HealthVault), exchanges (master patient indexes) and regulatory registries (narcotics and all payer claims databases).

These aggregators of personal medical information may not be directly involved in patient care today but they are increasingly important as a convenient perspective into our fragmented healthcare delivery, a guide to reducing our insurance and out-of-pocket costs, and a convenient way to monitor both fraud and accidental errors. All too often, because healthcare providers are distressingly reluctant to share information with patients, these aggregators are also the best source of primary information. What better way do I have to know what care my mom might be getting than to download her BlueButton file from Medicare?

The patient’s right to access, ideally convenient access, to aggregators of personal medical information is not guaranteed. It’s actually a shell game between federal (HIPAA) and state privacy regulations where, as with most shell games, the patient usually loses.

All Payer Claims Databases (APCD) are a good example. Price transparency is almost unknown in US health care and a major impediment to patient engagement even as family healthcare costs cross $20,000 per year. State regulators eager to cut Medicaid and private insurance costs set up databases to inform policy decisions but, for political and technical convenience, make that data inaccessible to the patient themselves. Is this fair? Is it legal?

The legal situation situation is murky. APCDs point to HIPAA when it’s convenient even though HIPAA was designed to protect primary data sources such as hospitals and insurance companies that have a direct relationship with the patient. At the state level, privacy regulations are all over the map with powerful providers, insurers, agencies and special interest groups drowning out the common patient and family perspective.

Federal health care reform efforts are trying to do what they can. The recent ONC initiative on governance of entities connected to the evolving nationwide health information network seeks input on future regulations that could strengthen HIPAA and clarify the fairness and legal issues around state and commercial information aggregators.

Patient input into regulation is critical to the evolution of APCDs, the effectiveness of health insurance exchanges, the sustainability of health information exchanges and the ability of commercial services to innovate in support of real-world patient engagement. I posted some e-patient highlights here to get you going. Keep in mind that state-level efforts are arguably more important than federal ones.

It’s time for immediate, convenient and open authorization-enabled access to our personal medical information in all state and national projects.

Adrian Gropper, MD (Twitter @AGropper) is a patient-centered technology advocate and consults on health services strategy at HealthURL.com. He is driven by the vision of doctors and patients collaborating around shared health records.