Empowering Patients with Access to Health Records through Distributed Applications

Digital health technologies, encompassing telemedicine, genomics, artificial intelligence and beyond, have been receiving growing attention by governmental and health institutions all around the world. This follows an awareness of the capabilities of these technologies to help us provide personal care at scale and, ultimately, tackle critical population health needs.

Without a doubt, there is an exciting future ahead at the intersection of these data-driven technologies, healthcare and policy. Yet, it all comes down to one thing. Data.

Shortcomings of Our Digital Health Infrastructures

And we have some significant data-related problems. Across the world, patients’ health record data are entirely fragmented across geographical space; they are inaccessible; they are kept within differing proprietary structures, depending on the local system, and ownership is ambiguous with little-to-no transparency.

Improvements are occurring within the data-sharing landscape, but for the most part, a patient’s information remains spread across siloed EHR systems and other data sources. We currently lack streamlined approaches to access our health data in a timely and efficient manner based on a uniform standard.

While this has significant effects on how clinicians can provide care, one of the most insidious consequences is for patients—particularly those with long-term conditions—they are often kept uninformed as to their health record. This disempowers patients when they are at their most vulnerable.

Indeed, as doctors, we have been rightly trained to advocate for a patient-centred approach when caring for someone. Yet our digital infrastructures—without which much of the health system would not be able to function—does not reflect this fundamental value.

Abdullah Albeyatti, MBBS, BSc, MRCS, MRCGP, CEO of Medicalchain, discusses the use of blockchain technology to provide patients with control of their health data and the ability to grant access to providers at the point of care.

Distributed Applications to Empower Patients

A future is evolving where patients will have increasing amounts of medical information stored in their smartphone. But how much control of their digital record will the patient have, in terms of engaging with their own healthcare decisions?

It is my view that without a secure and unified health record, with the patient in control as in Estonia, many technological advances will be greatly limited. AI solutions will inevitably conflict with data-subject rights by training their models on siloed patient data, without transparency to users. Effective telemedicine will operate only between patients and their doctor or referred specialist.

The same common truth exists; data siloing prevents patient empowerment and undermines innovation. However, solutions that integrate health data and provide user-ownership in a health passport model are able to transcend these issues, facilitating a future of ethical digital health solutions for patients.

How do we achieve this? A first step is to build a health record system that provides patients with the complete, unmitigated, private and blockchain-secure access to their interoperable record and aligned with the most up-to-date open EHR standards. This type of system is in progress, with the National Health Service partnering with solutions that leverage blockchain-enabled technology to grant access to health records at the point of care. In many ways this is not reinventing the wheel. Estonia has already implemented a national blockchain to guarantee healthcare data integrity for its entire population of 1.3 million citizens.

While there is certainly a growing appreciation of the utility of blockchain for securing health records, the role of distributed applications within health has not been so widely discussed. Distributed applications move beyond providing records to patients. Instead, they allow users to directly interact with their health records so that they can engage and utilise their now available health data. This is a further level to empowerment; not only allowing access to data but enabling data utility and interaction. Distributed applications can take many forms and utilise numerous types of technology.

Telemedicine as a Gateway for Distributed Applications in Healthcare

Telemedicine is a strong fit for distributed applications as it is limited by modern health data infrastructures. Currently, many telemedicine consultations are limited to appointments with clinicians a patient already has a relationship with, to ensure the provider has access to the patient’s health record. Most commonly, this tends to be the individual’s local general practitioner. This leads to a lack of flexibility for the patient. Patients who seek consultations beyond this find that doctors do not have full prior information on them, which has consequences for care and the doctor-patient relationship.

Telemedicine solutions that are built upon a health passport model are now active. These support the scheduling of remote appointments with clinicians, building on a blockchain-enabled data platform, to grant clinician access to inform encounters. These encounters can happen anytime, anywhere and with doctors who have time-limited access to the patient’s record. This is because the patient is in the driver’s seat. Their record follows them, rather than the patient being limited by where the data resides. Licensed and approved doctors have the ability read and write to the record within the time period the patient sets. Patients can read their record at any time and provide permissions for viewing to whomever they wish. This demonstrates the intersection of patient empowerment through data, with an application that can be used in everyday life.

I look forward to a future where patients can actively engage with new distributed applications across numerous technologies, rather than being a passive end-recipient of them. From a medical perspective, this is the natural transition of how patient-centred care can be safely facilitated online.

Emerging technologies have the potential to provide substantial positive changes to how we practice healthcare. Yet, much of these technologies require a data-driven approach that our infrastructures—principally data siloing, leading to patient disempowerment—are not yet ready.

In an age where more patients are living longer, require interconnected multidisciplinary care and can benefit from advances in health technology, empowering patients is more important now than ever. Distributed applications may provide a new frontier for patient-centred digital health for all.

The views and opinions expressed in this blog or by commenters are those of the author and do not necessarily reflect the official policy or position of HIMSS or its affiliates.