T.P. Caruso & Associates

Envisioning a digital infrastructure for a Learning Health System

Tag Archives: Health IT

Health Record Banks as a Solution for a Self-Generated Health Information Exchange

Comments Off

One of my Self-Generated Health Information Consortium Steering Committee members introduced me to the concept of a health record bank (HRB, though I have been thinking along these lines for awhile now as reflected in my “Transforming Health Research through Use of a Secure Health Data Cloud” presentation made in December 2011 in Saudi Arabia as part of my efforts to develop Quantal Semantics, Inc.).  My investigation of this concept led me to the Health Record Banking Alliance as well as HRB business model and HRB architecture white papers about this concept for health information exchange.  I followed up with Bill Yasnoff the founder of the HRB Alliance and he has been very generous with his time to explain HRBs as well as a specific business plan for moving forward with an HRB.  I’ve asked many questions and I’m hopeful that this maybe the sustainability solution for self-generated health information exchange as well as for provider-generated health information exchange.

Unlike current efforts at providing health information exchange, an HRB is a store of all of an individuals health information in one account.  Access to this information is controlled by the individual or their proxies (i.e. family members).  Information is uploaded to the individual’s HRB account each time an entry is made in a healthcare provider’s EHR about that individual.  This would include doctors notes, lab reports, etc. that update the information for the individual in those EHRs.  The first provider that uploads information and creates the HRB account for the individual, gives that individual an account number from the HRB.  The individual can then provide that account number to any of its healthcare providers, or on their online accounts of self-generated health information (i.e. from mobile health apps or health and wellness devices, etc.).  This information is then all aggregated in the individual’s account where they are able to annotate it and control the sharing of that information.

An HRB would allow the individual to see all their information in one place, and when that information is needed it is efficiently located without any requirement for aggregating the information, as would be needed by current approaches to health information exchange.  As a result, the HRB gives the individual better control over their health information, allowing the individual to not only control who sees any portion of their health information, but also the ability to annotate it and to monitor who actually accesses the information.  Furthermore applications could be developed that would allow individuals to notify themselves or loved ones when their information is accessed, and if the information is accessed in some emergency situation by a provider, those family members who want to know about such an emergency can more quickly respond without waiting for a call from the emergency provider as they do today.

Furthermore, individuals who are interested in supporting research into disease could share their information, and they could potentially obtain funds for sharing that information from the organizations who want to access the information for research purposes.  The possibility of generating income from one’s information will create a variety of business models that will promote the development of higher quality data and larger aggregates of data for improvements in research, and even better efforts to personalize medicine.

The challenge is to get the healthcare industry to support this effort, and Dr. Yasnoff has a solution for that as well.  He proposes to use the funds generated from research uses and other applications sold that use this HRB platform, to support the implementation of EHRs by physician practices.  A discussion I had last night with a physician practice management organization suggests that this would be a viable idea from their perspective.

Filed under Biomedical IT, New Exchange Architecture, SGHI
May 23, 2013

Self-Generated Health Information – The Future of Caring for your Health

Comments Off

Patient Generated Health Data which we have renamed, and generalized as Self-Generated Health Information (SGHI), according to Shapiro, Johnston, Wald and Mon (1) includes:

“…health history, symptoms, biometric data, treatment history, lifestyle choices, and other information – created, recorded, gathered, or inferred by or from [individuals] or their designees (care partners or those who assist them) to help address a health concern.”

Products producing SGHI may have been in the hottest market space at the Consumer Electronics Show (CES) as shown by the number of newly introduced devices (2).  Fifteen of these devices created excitement at CES this year.  Partners Healthcare also launched a program they call Wellocracy, which promotes the use of devices creating SGHI to motivate individuals to set and obtain health goals (3).  Joseph Kvedar who leads these efforts for Partners says his research has shown that these devices can be used to keep people out of the emergency room.

This demonstrates the reason for all the SGHI device activity.  Reducing emergency room admissions is a major objective for healthcare organizations that are trying to respond to the new payment initiatives defined by the Acountable Care Act: Accountable Care Organizations (ACOs).  As a result, the driver of care cost reduction is moving away from health insurance companies like Aviva and the various affiliates of BlueCross BlueShield, and towards the care provider in a healthcare organization who will be increasingly encouraged to find ways to keep their patients out of their offices.

While the general expectation is that individuals, as they age are increasingly concerned about their health.  We can watch as the $1.9 trillion size of wellness markets that include markets like beauty and anti-aging, fitness and mind-body exercise, healthy eating/nutrition and weight loss, preventive/personalized health (in which these SGHI devices would be counted), complementary and alternative medicine, wellness tourism, spa, medical tourism, and workplace wellness have been increasing steadily in lock step with this phenomenon as the Baby Boom generation is aging well into their sixties and seventies (4, 5).  The Accountable Care Act (ACA) of 2009 further reinforces these trends as the traditional healthcare systems have failed to control costs and are further burdened by a rapidly aging population.

(1) Michael Shapiro, Douglas Johnston, Jonathan Wald, and Donald Mon.  Patient-Generated Health Data White Paper, prepared for the Office of Policy and Planning, Office of the National Coordinator for Health Information Technology, April 2012, pp. 6.

(2) Jonah Constock.  Slideshow: Health devices that launched at CES 2013, MobiHealthNews.com, Posted January 10, 2013, Last Viewed January 19, 2013.

(3) Bernie Monegain.  Wellocracy launches at CES, mHIMSS, Posted January 9, 2013, Last Viewed January 19, 2013.

(4) Estimated gobal market size of the wellness industry clusster in 2010.  SRI International. Posted by Statista 2013.  Last Viewed January 19, 2013.

(5) Dulcy Gregory.  Wellness Is No Passing Fad: Global Market Estimated at Nearly $2 Trillion. SRI International.  Global Spa and Wellness Summit, Blog Posted June 24, 2010.   Last Viewed January 19, 2013,

Filed under Health Care System, SGHI
Jan 19, 2013

Use of NextGen Diagnosis and the Healthcare Reimbursement System in the U.S.A.

Comments Off

The U.S. has a dilemma concerning genetic tests because health insurance companies may abuse knowledge of this information to modify health insurance premiums.  Health insurance reimbursement is the central issue underlying health information privacy concerns.  I don’t want my insurance company knowing about the factors that might predict the costs associated with my healthcare in the future, so I don’t want them to know my genetic information.  But this has a huge impact on my ability to learn about what type of care I might need because healthcare providers want to limit their exposure to liabilities associated with (1) accidentally releasing this information to insurers, and (2) knowing my genetic predisposition to disease without taking appropriate action.

In this era of next generation sequencing (NGS), we can already generate a huge amount of information about my health and the health of my parents and children, simply by knowing specific sequences of my DNA.  And in the near future, if my entire genomic information were available to health researchers who could link clinical information to NGS information, the possibilities are limitless about what could be learned about how to better care for me and my family.  However, healthcare companies in the U.S. don’t want this information because it creates too much of a privacy liability for them, not to mention the liability of withholding information that eventually results in costs that they could have prevented with the knowledge of this information.

The first of these problems, related to privacy concerns, is not a problem anywhere else in the world because health care is paid by a single payer which will pay for an individual’s care no matter what genetic predispositions they may have.  In the U.S., EHR systems are not capable of segmenting some genetic information from all genetic information based on what information an individual wants to share with his care providers and what information he or she wants to keep private.  U.S. healthcare providers are therefore debating what genetic information to keep out of my healthcare record so there is no record of it at all, and generating only information that is absolutely required because I have requested it or my care requires that it be obtained.

Before I can really get the benefits from this information, I will need to take full control of my electronic health record (called an electronic personal health record, or ePHR), just as I have taken full control of my personal financial records.  I will then be able to decide what information to share and with whom I want to share it.  I will also decide if I want to allow some organization to accumulate some or all of my genetic and clinical information for research purposes, and until I am certain that my genomic information – which I had no way to influence – will not effect my insurance costs, I’m not sharing it with anyone.

It will be a long time before we get all the benefits from information we can now generate easily.

Filed under Health Care System
Oct 29, 2012

No PHI

Comments Off

A health information cloud (HICloud) doesn’t need Protected Health Information (PHI) to support health information exchange.  You can keep PHI private and locked away in your private, secure databases.  Then you can use a portion of that PHI (e.g. First Name, Last Name, Birth Date and Last Four Digits of Social Security Number), if you are authorized, or you can input your own PHI with a password, to get all the health information that is in the cloud.

Such a HICloud is highly secure from abuse by individuals who want to link health information to PHI, for insurance purposes or employment evaluation, etc., because the PHI is not there to be found linked to anything.  You have to provide the PHI to make the link, but more importantly, even with the PHI (so you know Name, Birth Date and Last Four Digits of SSN) you still have to be authorized to be receiving information from any PHI you might enter.   You can’t find everyone with a particular symptom, nor can you find everyone who lives in a particular place of a certain age, and you can’t associate that information with health information because that identifying information is not in the HICloud.

A few challenges arise from such HICloud, but they are surmountable.  For instance, date-related information is needed for proper aggregation of health information, but using relative information such as a stamp that indicates that a particular “chunk” of health information created today was created 20 days after the previous chunk of health information.  Age information can be hidden within categories like 0-4, 5-9, 10-14…older than 80.

The biggest challenge is the use case in which a care provider needs to get health information about an unconscious individual who needs emergency health intervention.   If the individual has the necessary PHI on their person, then there is no problem, but what if all that is known about the individual is where they live, how tall they are, the color of their hair, and the location of a birthmark.  A service could be provided, on a separate system, not directly connected to the HICloud, that allows emergency medical personnel to do searches for PHI.  When the PHI is thought to be found, special authorization could be provided to use that PHI to aggregate that individual’s health information from HICloud.

Secure and privately maintained PHRs, EHRs, and EMRs can contain the necessary PHI for accessing all the health information in the HICloud, but only those with official authorization from the individual who owns the PHI.  Even access to deidentified information about each individual requires a consent from that individual, in case that individual feels insecure sharing even deidentified information.

Such a capability makes sense and is possible.  Furthermore, it makes health information exchange much easier that through a network of health information exchanges, and it provides a means of paying for the costs of the health information storage and health information exchange since those with authorized access to the consented deidentified information can be paying for that access.  Furthermore, a portion of the funds received from organizations searching the consented deidentified information can flow back to the individual providing that information as a further incentive for sharing.   Entire business models can be built around payment for access, health information exchange, and individual consent.

What’s holding us back from building a HICloud that contains NO PHI?

Filed under Think Tanks
Sep 15, 2011

Let’s Think Different

Comments Off

I wonder whether the author of the Healthcare Technology News blog post called “Think Differently – the sequel” thinks that the ONC and their PCAST Workgroup is actually “Thinking Differently”?  Though it was a good summary of the PCAST HIT Report and the PCAST Workgroup Report released in mid-April, the blog suggested this was thinking differently.  Would Steve Jobs (Mr. Think Differently) say that they are thinking differently?  I think not.  Certainly PCAST thought differently when they published their treatise about health information exchange; however, the ONC and its delegates in the HIT Policy Committee are constrained by legacy thinking.  How do we best go from where we are now to there?  That’s legacy thinking and that’s what ONC is doing with the PCAST Health IT Report.

The Biomedical Informatics Think Tank™ thinks differently: that knowing where we are going does not require knowledge of where we are, but only what we want to be able to do with this new exchange architecture.  We are conceiving a technology that will create a Health Data Cloud (see my latest blogs: Why Build a Health Data Cloud and A Health Data Cloud is a Powerful Tool for Health Research), which will attain the objectives set out in the PCAST Health IT Report: Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The Path Forward:

  1. “Every American will have electronic health records and will have the ability to exercise privacy preferences for how those records are accessed, consistent with law and policy.
  2. Subject to privacy and security rules, a clinician will be able to view all patient data that is available and necessary for treatment. The data will be available across organizational boundaries.
  3. Subject to privacy and security rules, authorized researchers and public health officials will be able to leverage patient data in order to perform multi-patient, multi-entity analyses.”

The technology will be based in the latest thinking with a mathematical foundation for medical semantics, privacy and security in a cloud, social networks that empower individuals, and health ontology.  We start our thinking with what we want and think about the best way to meet those needs with technology that will serve us for a long time into the future.  That thinking is not constrained by current ideas about EHRs and time frames to get new technology standards implemented, a clear constraint of the Health IT Policy Committee’s PCAST Workgroup.  We will be part of a transformation health information exchange through our efforts, just as Apple has been part of the transformation of personal computing since the 70′s.  We think differently, and we invite you to think differently with us.

Here’s some different thinking: ONC should invest in a major effort, exceeding the scale of The Human Genome Project (HGP), to define a New Exchange Architecture with a Universal Exchange Language, and then they can actually build and manage the Health Data Cloud that will be required.  This is just as important as the HGP, and in fact, a continuation of the personalized medicine movement that is partially driven by the results of the HGP.  The HGP cost taxpayers $2.7 billion (HGP Frequently Asked Questions, Oct 2010) and much more was contributed by international government agencies from the UK and other countries, as well as by private and non-profit organizations towards this same goal.  HITECH put ten times this amount, $27 billion into motivating healthcare providers to move into the 21st century of health IT and electronic health record technology.  Only 10% of this funding could transform with a New Exchange Architecture.

Let’s think differently!

Filed under CER, New Exchange Architecture, ONC, PCORI, Think Tanks
Jun 30, 2011

RSS T.P. Caruso Blog