Patient Generated Health Data (PGHD) - The "Killer App"

Technology often goes hunting for a problem to solve, this becoming more evident as technology funding is skyrocketing, producing an environment of technological acceleration.   Healthcare technology fueled by the ACA and the need to reduce cost is in the forefront of the movement.  PGHD, the human endpoint for data collection and the place where answers lie, has been mostly overlooked in medicine, drafting far behind clinically collected data.   PGHD holds the verifiable keys to individual and public health, filling the gaps of clinical data.  PGHD along with IoT devices will provide a  contiguous stream of patient data becoming the"The Killer App" of healthcare and clinical research.

Recently the ONC commissioned Accenture to develop a draft Whitepaper on PGHD,  "Conceptualizing a Data Infrastructure for the capture, use, and the sharing of Patient-Generated Health Data in Care Delivery and Research through 2024".  It is currently in draft and a good overview of the PGHD landscape.  

What I find lacking in the draft is the upcoming deluge of IoT information such as, home and workplace environmental data along with endpoints such as vehicle OBR (On Board Reporting), which impacts a person's health.  It is predicted that we will have thousands of sensors providing bio and environmental data in the very near future.  How and where are we going to store and provide access to this data? How will it be authenticated and secured? Will it become part of our medical record? Who will own and manage the data?

Much of this data will be near real-time streamed data which will need to be cleaned, compressed and analyzed.  EHRs, which focus on the collection of clinical data do not have the ability or architecture to manage this high volume of non-clinical data.  PGHD data is unstructured, it doesn't follow standards such as HL7 or LOINC to name a few, and is mostly stored in proprietary data sets.  The data doesn't fall under HIPAA protection unless it is stored in an EHR raising the liability of the providers and organizations. 

Technology is ahead of the ONC timeline, by 2024 the end date for ONC adoption, I predict the amount of PGHD generated will surpass the amount of clinical data collected, swinging the pendulum of value to the PGHD.  Why, because data is where the answers lie, the value.

The growth cycle will probably need to be brought in two to three years based the current rapid development of sensors and IoT technology.  This will future stress the EHR vendors to attempt to accommodate this data rather than focusing on their core business of providing an interface for providers to access patient data.

Security and privacy are a major concern with IoT sensors and devices.  It takes an architecture that is built from the ground up to support remote client devices. A secure architecture which supports authorization, authentication, data-provenance, non-repudiation and transparency.

A new PGHD data architecture is needed to provide an interface between the EHR and the Patient's devices.  A platform that can scrub, analyze and format results and findings for a provider to access via a portal or EHR.  Health Record Banking may be the solution, a patient controlled standalone distributed database that is secure,  accessible anywhere, anytime and anyplace,  

"Yes, you can drive your car with your feet, but why would you want to." #Blockchain

I was speaking with a VC the other day about Blockchain and he asked me, " what can it do for me that other technology aren't already doing?"  I asked him to elaborate"  He proceeded to mention we already have security, communication, interoperability (to some extent).  I retorted, yes, but they are failing, e.g., many breaches and most EHR are not connected.

Where I see a difference in Blockchain; it's is a simple, transparent and secure framework to solve a difficult problem(s).

Blockchain wouldn't store PHI, however it stores the location of the data, the links to the other associated record on that chain, and the hashcode which is used to verify the integrity and provenance of the data. The blocks are verified, non-reputable and the security is provided by Public Key Infrastructure (PKI).

The real reason to use Blockchain is the simplicity and transparency and yes, you can do a lot of the same things with existing models. Same thing that they said about horses when the auto showed up.

Distributive Ledger AKA Blockchain have been around for quite a while, Bitcoin just brought the technology front and center.  Application like Bitcoin may fail however the infrastructure that supports the application will stay around.

I like the old saying that my chief architect used to say to me years ago, "Yes, you can drive your car with your feet, but why would you want to".

If you are interested in reading about another use of Blockchain in healthcare check our  Peter B. Nichol and my submission to the ONC Blockchain Challenge, Birth of the CryptoCitizen for Healthcare in CIO.

Secure Cradle to grave Electronic Medical Record WITHOUT disruption, Distributive Ledgers. AKA Blockchain

The latest hack of Hollywood Presbyterian Medical Center again bring to our attention for the need of security in healthcare to be updated.  The Current system is failing! Distributive Ledgers an architecture that supports Bitcoin, which is called Blockchain, could provide the security and control of patient records and providers communication.

 One of the issues with modern Electronic Medical Records (EHR) is the inability to interoperate.  HL7 standards organization has provided protocols for transmitting the information, however that is only a small part of the problem.  Issue such as provenance, Digital Signing, content management, identity and encryption to name a few, inhibit easy sharing of data.   There is now a technology that could eliminate the majority of these issues and provide us with the promise of a Cradle-to-Grave EHR, that is Blockchain.   


Blockchain is the OpenSource technology that support the somewhat infamous Bitcoin.  Regardless of your opinion of Bitcoin, Blockchain technology is a very viable open distributive ledger solution.  Blockchain provide a P2P (point to point) encrypted realtime mesh network, where transactions are timestamped and verified on an open ledger system.  Consensus is the system used to validate the integrity of a message or document, each time a document is altered, a new block is added to the chain providing a linear and reproducible record of access and updates via a hashing function. 

I mentioned "without disruption" in the title because, health organizations have suffered a lot of disruption in the last few years with the advent of the EHR requirements.  I believe there is a better way to design, using an adjunct processor solution, i.e.,  by providing interfaces to the EHR via HL7 FHIR and providing a Blockchain API, the EHR can use a Blockchain without significantly disrupting their EHR installation.  

To answer the question of the Blockchain records, there are many solutions already available for storing records on open Blockchain, the Bitcoin chain. however, even thought blocks do not contain readable data, it may be optimal to store the records on private Permission networks, such as hospital networks and validate via consensus process or Paxos, such as, Practical Byzantine Fault tolerance used by Hyperledger, 

The following are some of the feature that would be provided to a medical record using Blockchain:

• Data Provenance

• Non-repudiation 

• Digital Signing of charts/records

• Linear chronological tracking, Audits records 

• PKI cryptography/encryption 

• Distributed decentralized, encrypted P2P messaging network 

• Identity management

• OpenSource

• Ubiquitous sharing of data

• No Single Point of Failure 

• Realtime transaction

• Content Management

• Public Records - Birth to Death longitudinal record 

• Uses ‘Proof-of-Work’ technology 

• time-stamping 
• 
  
• Private or public chains
• 
  
• Distributed databases

Insurance companies don't get it, yet. There is a lot to learn about Aetna's CarePass failure.

I was very excited to see the rollout of Aetna's Carepass at the mHealth Summit several years ago.  I seem to be a great idea, however it never got any real traction.  I spoke to some of the people on the team and there was a lot of excitement.  I envisioned a platform to connect to their providers, patients and EHR but that never happen.  Like so many health platforms on the market, they took the safe easy way out,  providing support to patient facing apps,  WHO CARES,  let me reiterate WHO CARES!

Some of these supported apps are great, but it is proven that most are downloaded used once or twice and abandoned.  The only way to get patient to really use apps is for doctors to prescribe them and then have a facility to transmit and store the patient provided data to the provider's EHR.  However, that is still somewhat of a dream, which there is yet to be a standard to support.

In order for a platform to be successful it must be connected to the healthcare eco-system, that is, the provider's EHRs.  However not happening, most of the EHR cannot communicate with themselves.  This is where Aetna had a chance to make things different, they could have demanded interoperability and communication with patient facing apps.  Yes, there are a lot of issues around this but I believe they were well positioned as a payor to bring about change.

One of the hurdles that I did see with Carepass is getting other Payers or providers outside of the Aetna network to use their platform.  I don't think that this going to happen for a while.  Which is a shame,  we need healthcare organization to work together if we are going to get true interoperability.   We also need companies such as Aetna to keep innovating pushing the old school status quo.

Change will come, it has to.

Jeff Brandt
www.dekaG.com