October 18, 2021

Imagining Forward – The Personal Health Record

The classic Robert Frost poem “The Road Not Taken” grounds the reader experientially in the vivid reality of a bracing fall walk in the woods in New England while at the same time inviting daydreaming speculation on the paths and consequences of our choices. The analogy to our industry works well. As an experienced woodsman, Frost knew that yellow leaves fell in the fall from Alder and Birch trees, which were always the first trees to grow back after a forest fire or some other harrowing. If you think of the constant change in our industry we are always walking amidst stands of a new “yellow wood” as opposed to older oaks or maples with red and orange fall leaves.

For example, there is a massive drive to put the health record into the consumer’s hands, coming from a collaboration of EMR/EHR Vendors, Healthcare Providers, Consumer Technology Vendors, and Health & Wellness-related Vendors.

Potential outcomes:

• Provided some baseline of societal technology equity can be achieved – for example, we could be sure that everyone owned some base level of smartphone with its own hardened crypto-vault – patients could become the actual owners of their own health records. This would likely require some government or industry-driven standard for components of a personal health record and some generally- accepted guidelines for how data in such a record is structured and managed. Provided these issues can be addressed, the industry could reasonably shift data stewardship and much of its costs and risks down to the consumer.
• A patient-owned health record could massively reduce data management and governance costs for healthcare provider organizations. Imagine the zettabytes of compliance archives that would be eliminated from provider mandates to retain patient PHI. The reduction in redundant copies of patient personal health data across providers could produce massive industry-wide savings in production, backup, and archive storage perhaps even to the extent where the carbon footprint in terms of electricity consumed by servers and storage arrays maintaining disparate and yet redundant copies of each individual PHR across the Healthcare Industry could be vastly reduced.
• A patient-owned health record would transfer the economic power of the patient’s data back into their own hands. Consumers could opt into industry studies and research programs in exchange for anything from reward points to direct payments to reductions in the cost of care or of health insurance.
• Each episode of care will start from the assumption that replication of – theoretically only the necessary components – of the Patient’s PHR into a temporary working cache at the provider location (whether virtual or physical) would create a workflow replacing today’s HIPAA sign-off in which the patient would authorize scope of data use and copying for that specific episode of care.
• We would need a set of rules that provided audited “break glass in case of emergency” alternate access to the “cloud replica” of the patient record if the patient were disabled or their device was damaged.

If this were a 1970’s-era Saturday Night Live skit, this is where the optimist, played by Steve Martin stares into the stratosphere and says something like “It will be a revolution! A new age of patient empowerment and decentralized data governance!” and then the pessimist, played by John Belushi would say something like “Nahhhhh. The industry will kill it over the monetization issues.” I guess we shall see. I personally hope we take the human fork in the path.

Jim Fitzgerald is a founder and Chief Strategy Officer at CloudWave. His opinions do not necessarily represent those of Park Place International LLC d/b/a CloudWave.