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,  

First Open mHealth Summit, a success for mobile health

I was lucky enough to be invited to the Open mHealth Summit event in San Francisco to witness the unveiling of the latest mobile framework and protocol for healthcare. I have been talking with Dr Ida Sim of UCSF for a few years about there Open mHealth (OMH) project.  We both agreed that there is a need for a protocol/standard to transport data between wireless smart devices without the overhead of the land based HL7 standards such as CDA or CCDA.  Several years before meeting Dr Sim I decided to quit complaining about HL7, so I joined and started try to bring about change in mHealth from within.  When I first read about Graham Grieve's FHIR, a Restful API interface to supplement or replace the CCDA I was thrilled, and implemented a version in a project before HL7 got a hold of it.  HL7 FHIR attempted to solve some of the mobile issues but fell short IMHO by implementing XML and retaining  some of the legacy overhead from the CDA.  FHIR, is good solution for web based solutions that need to communicate directly with and EHR or mobile with 4G, however much of the world including the US doesn’t have 4G and the overhead is still quite high and many solutions do not need to communicate directly with and EHR. 

Dr Sim and her colleagues have a dream to simplify the sharing of health data and there are well on their way to doing it.  If what I saw yesterday is any indication of the future, Open mHealth is the direction to follow.   Open mHealth as it names states is open source, it is not a standard, however most standards do not guarantee interoperability and never will.  The solution is Restfull APIs with “standard” clinical templates to share meaningful data.  OMH already has many supporter that are helping to extend the platform.  Catalyst has a solution that converts OMH into HL7 V2 (circa 1989) the most widely used protocol of healthcare and back again,  now that is interoperability.  There is also a project, Granola to serialize Apple healthKit and that alone is worth the effort to check out OMH.  

OMH doesn’t solve all the Interoperability issues and they are not really trying to, however they are solving the problem of sharing health data and reducing the amount of payload that is transmitted with a mobile smartphone.  Getting the EHR Vendors to except the data or to share their patient data that is locked in their silos is still an issue. 

I am very hopeful and excited about the work OmH has done to date.  

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