Patient-centered medical records with blockchain

Co-authored with Bill Wellman, adjunct faculty at Harvard University, where he teaches courses on innovation, entrepreneurship, and blockchain.
Patient-centered care is emerging as one of the standards for quality healthcare in the 21st century. Patient-centered care relies upon healthcare provider empathy for the patient, effective communication with the patient, and a true partnership between the provider and the patient focused on meeting the patient’s needs.
This is often related to an integrated understanding of the patients’ world, including their medical, emotional, and life issues. This understanding addresses the patient’s concerns during each encounter, provides the patient with the information they need, and achieves consensus between patient and physician on the diagnosis, treatment, and management of chronic conditions. Patient-centered care is designed to enhance the continuing relationship between the patient and the members of their care team including their doctor. Patient-centered care also requires the entire care team be fully informed about the patient and coordinate the care they deliver.
While the patient is central to the care, they ironically only have piecemeal access to their health record through portals provided by their physicians and other provider organizations. This issue is exacerbated in medically complex patients who see multiple physicians and other healthcare providers.
Patients have no way to ensure that each member of their care team, who often work in different provider organizations, receives the needed medical information. It is not uncommon for a specialist to tell patients to bring a copy of their medical record with them. After specialist visits, primary care physicians are often not fully informed about the visit results. A patient must often access multiple portals to piece together a longitudinal view of their medical record. This represents low quality and unnecessary friction for the patient who should have access a complete medical record through one application.
In the current state of patient-centered care, patients have virtually no control over their fragmented medical information/medical record. The patient can’t decide who can see their medical information or how it will be used. Highly private information like an overdose, addiction, abortion, or suicide attempt is not controlled by the patient. In fact, the patient has no say in who sees this information other than those protections provided by HIPAA. Patients receive no feedback on who has accessed their medical record or what information has been viewed.
Patient-centered care should provide patients with access to and control over their medical information and medical record. Blockchain provides a vehicle to facilitate information sharing between patients and their care team, providing patients with access to and control over all of their medical information.
Patient data can be stored in the blockchain using several approaches. Data, such as a continuity of care document (CCD) can be encrypted and stored directly on the blockchain. Alternately, a pointer to the location of the CCD data using the FHIR standard could be stored on the blockchain in an encrypted form. The patient’s name or identifier information would not be associated with this information, only their public key identifier that the patient would provide to each of their providers. This approach is a direct consequence of the pseudoanonymity property of blockchains.
Once the patient’s medical data is written to the blockchain, it can only be decrypted using the patient’s private key, thus providing patients with control over information transferred between provider organizations. Access to authorized individuals (physicians, emergency departments, etc.) could be granted using smart contracts – resident in the blockchain but owned by the patient – when certain conditions defined by the patient had been met. Through the use of smart contracts, the blockchain data could also routinely be audited for expected updates.
Patients could log the encrypted encounter with the physician or other provider to the blockchain using a health wallet to record healthcare appointments and encounters. The smart contract could check to ensure the blockchain was being updated with medical information from that provider, thereby providing the patient with an automated way to ensure information is made available to other provider organizations.
When providers need access to the patient’s medical information in the blockchain, the provider’s system could automatically contact the blockchain where the patient has granted access. Authorized providers could obtain access in accordance with the patient’s preferences and patients would know which providers were accessing their medical information. Patients could grant full access or elect to limit access to some information based upon preferences. Perhaps more importantly, providers not accessing the patient’s medical information after a visit could be detected by the patient’s smart contracts and the patient alerted.
A system of checks and balances could proceed in the background with the patients receiving alerts and warnings when information is not flowing as expected between providers. In addition to creating greater transparency and accountability between the patients, physicians, and other members of their provider team, the patient would also gain increased control over their medical information. With the use of smart contracts serving as “agents” of the patient, this process could be highly automated and greatly simplified.
An unintended consequence might be a reduction in medical errors resulting from improved patient access to medical information and increased self-advocacy. This may also emerge as the solution to solving the unique patient identifier problem.
In the era of patient-centered care, blockchain technology offers patients improved control over their medical information and enhanced transparency established by a system of checks and balances across their provider teams that may improve quality and enhance the patient’s role as a true partner in their care process.