Making the Case for Affordable, Integrated Healthcare Data Repositories and PHRs

Healthcare Data MapTackling the rising cost and complexity of healthcare delivery in the U.S. and, increasingly, around the world while improving health outcomes is one of the great challenges of modern civilization. This is the primary mission of the Affordable Care Act (ACA), better known as ObamaCare, which is funded by ARRA, The American Recovery and Reinvestment Act of 2009.

Far from being an exact science, the practice of medicine is highly specialized and compartmentalized – unlike human beings who are an amalgam of interconnected and related physical systems, emotions and thoughts. Today, most of us humans find ourselves at the nexus of the healthcare delivery and management debate, and healthcare data is an integral part of the discussion.

Navigating today’s complicated healthcare ecosystem and the nuances of ACA demands that individuals take more responsibility for managing their own and their family’s healthcare services. This includes selecting a variety of healthcare professional partners who will help guide us through our health and wellness journey so we can receive the best possible health care advice and services. Healthcare data is undeniably one of those partners.

ACA promises to increase access for individuals to higher quality information regarding the efficacy of providers, procedures, medical research, case studies, outcomes data and comparative cost data previously reserved for “experts” only.

Now, due to changes in laws governing the ownership and access to healthcare records and thanks to advances in electronic data collection and analytics, laymen have the right, and the means, to review and manage their own and their family’s personal healthcare records (PHR) and view aggregated or “cleansed” healthcare data that may support better care and help improve outcomes.

Unfortunately, much of our collective potentially useful healthcare data is still locked away in paper records or inaccessible data formats within provider archives and siloed computer systems despite the fact that technology to access or “crack” these formats has been commercially available for more than a decade.

In addition, the vast majority of hospitals, physician groups and other providers have been slow to adopt these solutions or they have invested in older technology that makes the data extraction problematic or prohibitively expensive. Privacy and security concerns are also cited by those who hold or “curate” our personal health data as justification for delays in promoting potentially useful data to individuals and researchers.

At the same time, personal healthcare records advocates such as Patient Privacy Rights.Org decry the loss of individual anonymity as PHRs are legally, and illegally, resold to “thousands” of healthcare analytics companies for purposes far beyond improving health outcomes.

In addition, studies of electronic health records (EHR) solutions, including a withering article in the New England Journal of Medicine entitled Escaping the EHR Trap, suggest EHR solutions are overpriced, inefficient and EHR solutions vendors selfishly are fostering stagnation in healthcare IT innovation.

Meanwhile, ACA is allocating roughly $19 billion for hospitals to modernize their medical records systems encouraging the adoption of technologies that are often 20 or more years out of date compared with technology adoption curves in several other industries including finance, ecommerce, manufacturing and even government agencies.

Whether or not individuals and providers are fully aware of the ramifications born of the healthcare Big Data explosion, the industry is crying out for help to resolve critical issues at the center of the controversy including; tackling security; fraud and transparency concerns; data portability and ownership; using healthcare data exclusively to improve outcomes; and applying the brakes to escalating costs.

The Changing Healthcare Landscape

Dr. Toby Cosgrove, CEO of the Cleveland Clinic, recently remarked at the 2014 World Economic Forum in Davos, Switzerland, “Now, healthcare is more of a team sport than an individual sport. Between doctors, nurses, technicians, IT people and others, these days it takes a whole team of people working together across specialties.” (Huff Post Live at Davos)

At the center of the team is the individual or the patient advocate – most often a family member such as a parent, child or sibling – who is responsible for orchestrating a legion of healthcare providers and technicians that might also include nutritionists, physical therapists, wellness advisors, and alternative medicine practitioners such as herbalists or chiropractors.

Also weighing in from Davos, Mark Bertolini, CEO of Aetna, the third largest health insurer in the US, says, “Healthcare costs are out of control. We really need to look at how health care is delivered and how we pay for it. Today, we pay for each piece of work done and so we get a lot of pieces of work done.” Bertolini points out that Americans are gaining more control and more responsibility for their medical bills with individuals paying about 40% of costs through premiums, deductibles and other charges.

Today, healthcare providers are relying more than ever on data derived from multiple sources to supplement traditional modes of diagnoses and care. Much of this data, useful to providers, payers and individuals, is stored on paper records but also increasingly in electronic form in a variety of “data silos” across the healthcare continuum.

The integration of these data silos to gain a holistic view of each individual’s historical healthcare record while, in the process, also achieving an aggregated view of health populations holds great promise for contributing to improved healthcare outcomes and overall lower costs. This integration and secure portability of health records is one of the primary challenges for the ACA.

The aforementioned $19 billion is being allocated for Medicare and Medicaid electronic health records (EHR) Incentive Programs to encourage eligible providers (EPs) to update their computer systems in order to demonstrate “meaningful use” (MU) of healthcare technology that meets a variety of “core objectives” including; keeping up to date patient medication and allergy histories, consolidating personal health records and demonstrating the ability to securely transmit EHRs to patients, other providers and health information exchanges (HIEs).

The MU program is administered by the Office of the National Coordinator (ONC) for Health Information Technology (HITECH). Most of the money is earmarked for EPs such as hospitals, physician groups, HIEs and other EPs.

One of the 17 Stage 2 core objectives of the MU EHR incentive program for 2014-15 is to “Provide patients with an electronic copy of their health information (including diagnostic test results, a problem list, medication lists, and medication allergies) upon request.”

On the face of it, the objective of Measure 12 is simple. In practice, there are very few hospitals today that can comply with the letter of the law and therefore are in jeopardy of not meeting HIPAA requirements and losing future meaningful use incentive dollars – allocated in stages over several years.

Here is a link to an ONC document that outlines all of the Core Objectives for Stage 2 MU.

What is the Law?

HIPAA laws have been strengthened over the last decade to enforce the rights of individuals and strongly encourage HIPAA compliance from providers, payers, employers and other covered entities where HIPAA compliance is required. The following link HIPAA PHR and Privacy Rules outlines an individual’s right to access their electronic records.

Later this year, amendments to HIPAA privacy rules will go into effect that provide individuals greater ability to access lab reports, further “empowering them to take a more active role in managing their health and health care,” according to the rule.

HIPAA rules have also been amended to provide individuals and government agencies with recourse if HIPAA security is breached or if personal health records are not made available in a reasonable timeframe, usually within several business days. A California based privacy group details the types of PHRs, what laws protect individual rights and examples of fines that have been recently levied on health providers that do not comply with HIPAA regulations. One health insurer incurred a $1.5  million fine while a cardiac surgery group was fined $100,000 for not properly implementing HIPAA safeguards.

On the flip side of the argument, Dr.  Deborah C. Peel, Founder and Chair of Patient Privacy, believes HIPAA rules have actually been weakened. In recent “testimony” addressed to Jacob Reider, MD, National Coordinator for Health Information Technology at the ONC, Dr. Peel articulates her concerns about the widespread practice by analytics companies, payers and providers of Patient Matching – a technique used to exchange U.S. health data without patient involvement or consent.

In part, Dr. Peel asks, “How can institutions exchange sensitive health data without patient participation or knowledge?” Apparently relatively easily.

Healthcare Data Map

A “live” Data Map of the above graphic was developed in cooperation with Harvard University.

At present, $ billions of MU dollars are still available for EPs to support adoption of EHRs and electronic medical records (EMRs) solutions. However, by 2016, The Centers for Medicare & Medicaid Services (CMS) will withhold money from providers who do not comply with MU requirements. CMS has already stopped paying for what it characterizes as avoidable readmissions for congestive heart failure (CHF), Acute Myocardial Infarction (AMI) and Pneumonia (PN).

CMS is also finalizing the expansion of the applicable conditions for 2015 to include; acute exacerbation of chronic obstructive pulmonary disease (COPD), patients admitted for elective total hip arthroplasty (THA) and total knee arthroplasty (TKA).

Value of EHRs and PHRs

As indicated in this health records infographic (also seen below), EHRs and personal health records (PHRs) are becoming more valuable to providers and individuals with more healthcare data available on line and technology advances to leverage the data in multiple ways.

Healthcare Infographic onc_consumer_task-6.3_infographic_final

More than 10% of smart phone users have downloaded an app to help them track or manage their healthcare services and 2 out of 3 people said they would consider switching to providers who offered access to their health records through the Internet.  (Even more reason to place control of data in the hands of those that will use it to benefit the individual.)

Better access to health information has many benefits including; less paperwork and easy access to records, better coordination of care across providers, faster more accurate filling of prescriptions and fewer unnecessary and duplicative tests that inflate costs or involve some risk.

Ultimately, EHRs and PHRs offer the individual better control over their healthcare experience and give caregivers additional information to improve their quality of service.

PHR services such as Microsoft’s Health Vault – along with 50 plus other non-profit and for profit PHR related services including Medicare’s own Blue Button PHR service – offer users a way to collect, update, store and selectively transmit medical records to providers or anywhere they choose. Medicare (CMS) has opened its Blue Button format to encourage “data holders” and software developers to adopt its Blue Button Plus (BB+) framework, which offers a “human-readable format and machine-readable format.”

Despite security concerns and potential loss of anonymity, millions of Americans have reasoned that capturing and sharing their personal health data has some value. Analytics firm IMS Health evaluated over 43,000 health related apps available for Apple smart phones alone. While IMS concluded that only a small number of apps were “useful” or engaging, the explosion in mobile health apps is only one indication of consumer interest in using health data to modify lifestyles in order to improve health.

While large health insurers such as Aetna and United Health Group have, on the surface, bought into the BB+ initiative, early indications are that usage is less than 1% out of a potential pool of roughly 100 million U.S. citizens. That pool includes health insurance companies, health information exchanges (HIEs) and the Veterans Administration.

One could argue the BB+ program is new and not yet well publicized or understood. For those of us who have actually signed up for PHR services and tried to use them, the bigger problem is likely poor user interfaces and an overall lackluster customer experience leading to little motivation for engagement.

Barriers to EHR and PHR Adoption

There are several factors slowing the widespread adoption of electronic healthcare records by providers and individuals including politics, education, cost, transparency, flawed technology and workflow, and lack of engagement and innovation.


Until recently, there was no clear statement from lawmakers on ownership of personal health records or any teeth to enforce HIPAA security standards. Providers, payers, pharmaceutical companies, analytics firms as well as government agencies who possessed EHR data “owned” the data. Even as the government has declared individuals own their data, the value of EHRs to the entire healthcare ecosystem has increased exponentially.

The more providers move to EHR solutions, the more coveted that data has become to support research, drug trials, population health, fraud detection, supply chain management, clinical informatics start-ups, venture capitalists and other lucrative data analytics related businesses.


Those members of the healthcare ecosystem who are benefiting financially from reselling de-identified, aggregated or enhanced EHR data usually prefer not to publicize their windfall. Publicly, the ecosystem prefers to focus on the value to individuals – of which there is potentially much benefit. However, the financial benefit does not easily trickle down to individuals or even to most caregivers.

With the individual in control of their own data, the potential for dramatically improving the accuracy and efficacy of individual and aggregated data is enormous. There should be some financial benefit to the individual in the form of lower healthcare costs, reduced prescription drug costs and healthcare insurance rebates for accurately gathering and managing PHR data.


Most hospitals are spending $ millions on migrating older EHR or electronic medical records (EMR) systems to MU “certified” solutions. However, MU incentives only pay a fraction of the cost of these systems. For example, a single practitioner or EP will get less than $50,000 for complying with MU, which is likely less than the initial cost of a MU certified solution for the first year or so.

In comparison, Kaiser Permanente, one of the country’s largest providers, has 17,000 doctors. With Kaiser receiving $50,000 for each EP, the total MU incentive reimbursement would be a whopping $850 million. Unfortunately, Kaiser has purportedly spent over $3 billion on their EHR upgrade – and counting.

Up to this point, MU incentives have not required providers to link or integrate all of their internal IT and hospital systems. Given that most providers are falling behind with existing MU incentive objectives, total integration is not on most providers to do list as of yet. Kaiser and other leading edge health systems such as InterMountain and the Mayo Clinic have largely completed their integration but at a very high cost.


Despite MU requirements that require more transparency to meet quality objectives for reimbursements, some providers may be reluctant to disclose all patient information to individuals including detailed, consolidated procedure and billing information. This level of detail may expose overuse of certain procedures or a pattern of overcharging for services.

Individuals may also not want certain procedures (liposuction or AIDs testing) or lifestyle choices (drinking in excess or drug abuse) recorded in their charts for posterity. Security in general is an issue for most providers as their systems and IT managers may not have access to the most up to date security solutions. Most providers are far from leading edge when it comes to data security.

Flawed Healthcare Technology and Workflow

As the saying goes, “In the land of the blind, the one eyed man is king.” The scramble to adopt certified EHR solutions to qualify for MU incentives has an unfortunate consequence; the bulk of the EHR solutions have severe limitations starting with the lack of interoperability.

For instance, a patient may be admitted to the emergency room, then be sent to intensive care, followed by x-rays, go for surgery and then follow up a week later as an outpatient in the doctor’s office. In most cases, the EHRs are supplied and supported by different software vendors supporting different record formats. If the patient has a nutritional component or rehab is required, those visits might also be recorded in different systems.

Doctors complain that using EMR solutions has turned them into data entry clerks. Beyond diagnostic and billing codes, there is often no standard nomenclature for some diseases or ailments. Meanwhile, EHR vendors claim their solutions are capable of being the “System of Record” or the central repository for all of a patient’s consolidated records.

This recent article from Medical Economics makes the case for why there is such an outcry from physicians over the poor functionality and high costs of EHRs. A study referenced in the article found that 2/3rds of doctors would not purchase the same EHR again. Doctors also complained of lost efficiency and the need for additional staff just to manage the new EHRs as well as negative impacts on the quality of patient care.

Experience has demonstrated that the more popular EMRs are good at billing, supporting some workflows, basic reporting and collecting data from some other systems to include in or attach to a patient’s chart. However, no EMR solution has adequately demonstrated that it can function as an integrated data repository while sustaining the high speed and volumes required for clinical decision support systems, analytics and medical informatics solutions that are fast approaching the multiple hundreds of terabytes range and require sub-second response times.

Dr. John Halamka, who writes the Geek Doctor Blog and is the CIO of one of the few remaining hospitals in Eastern Massachusetts that is not migrating its EHR/EMR to Epic (the previously mentioned “one eyed man”), compared his plight to the final scene in the movie Invasion of the Body Snatchers. At times, in the era of Epic, I feel that screams to join the Epic bandwagon are directed at me.”

Halamka adds, “The next few years will be interesting to watch. Will a competitor to Epic emerge with agile, cloud hosted, thin client features such as Athenahealth?  Will Epic’s total cost of ownership become an issue for struggling hospitals?  Will the fact that Epic uses Visual Basic and has been slow to adopt mobile and web-based approaches prove to be a liability?”

On its “about” page, Epic touts its “One Database” approach;All Epic software was developed in-house and shares a single patient-centric database.” That one database, referred to by its unfortunate acronym, MUMPS, was developed in the 1960s at Mass General. MUMPS and Epic have many critics who bristle at the idea of using “patient-centric” in the same sentence.

Blogs, such as Power Your Practice contend that EPIC and MUMPS are stifling innovation. “MUMPS and Interoperability: A number of industry professionals believe MUMPS will be weeded out as doctors and hospitals continue to implement electronic health records, namely because MUMPS-based systems don’t play nice with EHRs written in other languages. There is a reason why the Silicon Valley folks aren’t too fond of the language.

If MUMPS truncates communication between systems, then it hinders interoperability, a cornerstone of EHR adoption. One of the goals of health IT is to avoid insularity, so unless your practice or hospital’s goal is to adopt a client-server enterprise system with limited scalability – and you don’t care much for interoperability – MUMPS may be an option for you.”

Epic and MUMPS have their proponents – primarily its buyers and users at almost 300 hospitals that have collectively forked over many $ billions to help make Epic a healthcare EHR/EMR juggernaut. This Google plus thread started by Brian Ahier is replete with heated exchanges about MUMPS and Epic’s lack of interoperability.

Lack of Engagement and Innovation

Standards such as HL7 are only partly working as they still do not handle unstructured data very well, and the mania of EMR vendors, some physician organizations and HIEs to structure all EHRs is unrealistic. Worse yet, the idea that each individual’s health narrative can be reduced to a collection of stock answers and check boxes is just not based in reality.

Managing your health records should not be like pulling teeth. The PHR “experience” is tedious, lengthy and boring akin to filling out an application for health insurance or filling out a medical history at the doctor’s office. It is heavy data entry with little interaction from the app itself.

In addition, most PHR solutions offer only static results with no intelligent mapping across populations or help to gather an individual’s “publically available” or private records. Even CMS’ Blue Button has provider and billing codes that do not translate well for non-healthcare professionals and BB plans only to keep records for 3 years – not nearly long enough to track certain individual or health population trends and services.

As pointed out in the NEJM article referenced above, “Health IT vendors should adapt modern technologies wherever possible. Clinicians choosing products in order to participate in the Medicare and Medicaid EHR Incentive Programs should not be held hostage to EHRs that reduce their efficiency and strangle innovation.”

Time for Affordable Healthcare Big Data Management

Affordable healthcare and improving quality is the primary goal of ACA. Affordable healthcare data management should also be a top priority as providers and individuals need access to timely information.

Already smaller providers and hospitals are pressed for funds to meet new ACA requirements and existing solution providers seem intent on exacerbating the problem with overly expensive, poorly functioning solutions and services.

Individuals also need access to affordable or, one could argue, free data to support their own healthcare journey and the healthcare services needs of their extended families.

Healthcare solutions and services vendors as a whole – compared with solution providers in other industries – seem less engaged with newer technology advancements that could help drive dramatic cost reductions in IT services and solutions adoption or, for that matter vastly improve performance. It appears healthcare solutions buyers are too willing to settle for less.

Too many healthcare data management solutions that claim to tackle big data are doing so with old technology. While the financial industry has widely adopted standards such as XML, SWIFT for inter-bank financial transactions and Check 21 for imaging – not to mention embraced the Linux and open source community – healthcare still struggles with HL7 standards begun over 25 years ago.

Yes, XML is used in healthcare to allow some basic document transfer interoperability between EHR/EMR systems. However, vendors such as Epic use proprietary extensions to make the transfer more difficult outside their system customer base. And yes, some older technologies still work well. COBOL programs are still integral to many mainframe systems. Nevertheless, most of the newer, innovative web-scale systems were developed using open source tools developed or refined in the last decade or so.

Web retailers such as Amazon have bypassed traditional relational database technologies for open source based NoSQL databases that are more scalable, available and affordable. Airline reservation systems have run into relational database bottlenecks and are deploying real-time, in-memory databases. Traditional brick and mortar businesses such as banks and retailers have embraced cloud computing and security standards such as Kerberos,  SAML  and OpenID.

According to Shahid Shah, The Healthcare IT Guy, healthcare IT needs to consider industry neutral protocols and semantic data formats like RDF and RDFa. “Pulling data is easier. Semantic markup and tagging is easier than trying to deal with data trapped in legacy systems not built to share data.”

Shah is not alone in his assessment regarding the cost of maintaining legacy data management systems. Many studies suggest older technology costs users more money in the long run.  Here are a few examples:  Big Data and the problem with Relational Databases, Understanding Technology Costs, and Time to Pull the Plug on Relational Databases?

In addition, there is at least one non-profit organization that views healthcare technology interoperability as a priority. The West Health Institute believes improving healthcare device interoperability alone can save the industry $30 billion per year.

Excerpted from the “pull the plug” link above, “Former Federal CIO Vivek Kundra recently said, ‘This notion of thinking about data in a structured, relational database is dead. Some of the most valuable information is going to live in video, blogs, and audio, and it is going to be unstructured inherently.’ Modern, 21st century tools have evolved to tackle unstructured information, yet a huge majority of federal organizations continue to try and use relational databases to solve modern information challenges.”

The same can be said of the healthcare industry. Despite industry efforts to structure as much healthcare data as possible, the bulk of healthcare data will remain unstructured and the narrative of each individual’s healthcare record will be the richer for it.

The Way Forward for Healthcare Big Data Integration

The development of affordable healthcare solutions needs to be focused on supporting the two primary partners in the healthcare ecosystem: Individuals and providers.

Clearly, tackling the problem of integrating disparate data types gathered from multiple sources and organizing that data into a cogent, human readable format is a Big Data challenge that demands 21st century Big Data handling solutions.

It should be understood that EHRs were not designed to manage a variety of healthcare data formats. In addition, massive RDBMS multi-year data warehouse projects utilizing limited, structured data sets were fine for retrospective or financial reporting but do not work well with large volumes of unstructured data needed for real-time and predictive analytics.

The EHR and PHR are intrinsically interconnected and inseparable. Making it easier for providers and individuals to develop rich healthcare narratives and securely share information should be a top priority for the industry.

As with the early days of the open source movement, most solution providers were slow to envision how to monetize a free software product. EHR integration solutions are expensive and PHR solutions are unwieldy and lack imagination.

The open source model is built around a common community goal. The common goal for EHRs and PHRs is to lower costs and improve healthcare outcomes. Improving the quality of healthcare data by encouraging the primary sources of that data to collaborate greatly benefits both parties – partners in healthcare data management and ownership.

HDR and PHR Sample Scenarios

The following scenarios are examples of how providers and individuals can play a major role in gathering and enhancing healthcare data for the mutual benefit of both parties. Implementing available, tested, secure, scalable and affordable 21st century technology also plays a key role.

Integrated Healthcare Data Repository for Hospitals

The Challenge

Changes in the economics of healthcare delivery brought on by new laws enacted through the ACA/ObamaCare rollout and the advent of Big Data technologies are forcing hospitals to rethink their funding, workflow, supply chain management, services, staffing and IT strategies.

The result is most hospitals are struggling to implement newer technologies that can help lower costs, improve patient outcomes and buoy employee job satisfaction.

Larger non-profit and for-profit hospital groups have an advantage over stand-alone or smaller hospitals and physicians’ groups due to economies of scale and efficiency including; increased purchasing power and negotiation leverage; standardization across hospital IT systems; flexibility of a larger workforce; broader service offerings; and more revenue to justify healthcare IT upgrades, capital expenditures and recruitment or retention of key staff.

Also critical is the ability to access larger pools of data to help meet ACA performance metrics, CMS reimbursement requirements and determine the best treatment options for individuals and larger health population groups. Smaller provider groups and hospitals can access larger pools of data offered by newly formed analytics groups owned by large providers, payers or analytics groups – for a price – including Optum Health and Verisk Health.

Data “curated” by providers and hospitals is virtually owned by the application vendors. To paraphrase Shah, “Never build your data integration strategy with the EHR in the center. Create it with the EHR as a first class citizen. Focus on the real customer the patient.”

The Solution: An Integrated HDR

Using mostly open source components including a NoSQL database, analytics and cloud orchestration software, and also leveraging existing underutilized network, hardware and storage assets, even a smaller hospital group can affordably create an integrated healthcare data repository (HDR) to help meet compliance, regulatory, internal reporting and clinical information requirements – and much more.

Integrated Healthcare Data Repository HDR

Several established and emerging vendors are eager to conduct proof of concepts (POCs) and partner with motivated hospitals that would prefer to stay independent and are struggling to keep expenses under control. Even larger hospitals groups struggle with integration issues.

Here is a link to a report on 21 NoSQL Innovators many of whom have a footprint in healthcare and offer open source or affordable and proven database alternatives to traditional, expensive relational databases. Examples include; NoSQL segment market share leader MarkLogic 7, open source DB community leader MongoDB and Virtue-Desk’s “associative” database AtomicDB.

HDR Benefits

Savings and Cost Avoidance

  • Spend thousands not millions on integrating healthcare data
    • Liberate your data from HIT solutions silos, make data analytics-ready
    • Lower legacy IT infrastructure costs (data, storage and compute)
  • Avoid expensive software licenses, upgrades and maintenance costs
    • Offload data from expensive data warehousing systems
    • Improve efficiency of existing software systems
  • Help meet ACA and MU compliance requirements
    • Integrate EHR data and deliver HIPAA compliant PHRs to patients
    • Support clinical decision support systems and analyze outcomes data
    • Enable predictive analytics to avoid CMS penalties
    • Avoid HIPAA penalties by avoiding unauthorized information releases
    • Maintain patient privacy of sensitive data, e.g. psychiatric progress notes
  • Avoid time consuming manual workflows
    • Automatically access data for operations and supply chain management
    • Support clinical, research efforts with holistic data views, visualization
  • Recruit and retain high quality staff by implementing state of the art technology

Revenue Generation

  • Analyze data to determine best treatment modalities for patient population
    • Run analytics against holistic data sets to improve treatment choices
    • Discover and predict needs of local patient populations
    • Focus on higher value services within the community
  • Partner with other providers, payers, pharma on aggregated, anonymized data
    • Data to supplement clinical trials
    • Data to supplement payer wellness programs
    • Data to supplement academic medical center research
  • Recruit local clinics, providers, employers, HIEs with state of the art solution
    • Share/defer system costs with local health provider participation
    • Embrace clinically useful information such as cancer genomics
  • Develop a true data partnership with patients and their families
    • Encourage individuals to return to your facility when seeking care
    • Support patient-centric wellness and care programs to local employers

Personal Healthcare Records

The Challenge

The U.S. and most of the rest of the world is in the midst of an elemental transformation in the way healthcare services are delivered to individuals and their families. The cost of healthcare is rising in real terms along with the percentage of the total cost of healthcare for which individuals in the U.S. are responsible – due to higher insurance premium deductibles and vital health services and treatments falling outside of insurance plans’ basic coverage.

Now that we have established the inevitability of personal healthcare information being created and used, for better or worse, as well as resold in a variety of legal and illegal forms, there are three fundamental questions that need to be answered:

1-      What role do individuals play in helping to reform healthcare delivery?

2-      How do individuals move from passive to active participants in their care?

3-      How can individuals leverage or monetize their personal health information?

Answers to the questions above include:

  • Request or demand more information about your care including treatment options, cost prior to agreeing to procedures and electronic copies of all your records. Store PHR in a central location e.g., spreadsheet, email with attached images or with a PHR service.
  • Individuals need to assume an active role in managing their own and their family’s care. In an age of hyper-specialization, individuals should not be surprised if they develop knowledge of an illness or treatment more comprehensive than many caregivers possess. Look for ways to share the knowledge with others who can benefit from it e.g., through online forums or information exchanges.
  • Seek out new web-based services that exchange healthcare information for individuals. There are more than 50 PHR services available today that range in price from free to “concierge” level services that charge a monthly fee. Business models that allow individuals to monetize their own PHR at this point are a bit early in the game but not at all farfetched. Business models and services are changing rapidly. Expect changes and new services to appear – services that are engaging and have a quantifiable value proposition.

In addition, a few assumptions need to be made in order to affect change:

1-      The individual (or a family member or duly appointed health advocate) needs to assume responsibility for their healthcare delivery and wellness strategy.

2-      More accurate, richer personal healthcare records along with access to anonymized, aggregated healthcare information and data can increase an individual’s chances for improved health outcomes at a lower cost.

3-      Data has value. Some say data is the oil of the 21st century. Payers, pharma, healthcare analytics firms and other for profit consumers of healthcare records data need to compensate individuals directly for their anonymized data – pay for it through a PHR broker, offer an incentive through lower premiums, lower cost of prescription drugs or provide individual access to outcomes data and wellness information.

Individuals also need to understand that much of the data being collected today is incomplete or inaccurate and is now “owned” by companies who have their corporate customers’, not the individual’s, best interests in mind.

Imagine following a recipe that has key ingredients missing.

Imagine all of the incorrect data being used by researchers to make multi-billion dollar decisions on treatment modalities and future clinical trial investments.

According to another blog post by Shah (The Healthcare IT Guy) entitled Causes of digital patient privacy loss in EHRs and other Health IT systems  “Business models that favor privacy loss tend to be more profitable. Data aggregation and homogenization, resale, secondary use, and related business models tend to be quite profitable. The only way they will remain profitable is to have easy and unfettered (low friction) ways of sharing and aggregating data. Because enhanced privacy through opt-in processes, disclosures, and notifications would end up reducing data sharing and potentially reducing revenues and profit, we see that privacy loss is going to happen with the inevitable rise of EHRs.”

During a podcast conducted last month by KCRW entitled, Big Data for Healthcare: What about patient privacy?, Dr. Deborah Peel noted, “Powerful data mining companies are collecting intimate data on us. We want the choice of sharing data only with those we know and trust to collect our data. Patients have more interest and stake in data integrity and patient safety than any other stakeholders.”

Dr. Peel calls this “Partnership with consent”. Unencumbered by the “expensive legal and contractual processes and burdens of institutions, and without the need for expensive, complex technologies and processes to verify identity, patients can move PHI easily, more cheaply, and faster than institutions. The lack of ability to conveniently and efficiently update demographic data is one of the top complaints the public has about Healthcare IT systems.

Health technology systems violate our federal rights to see who used our data and why. Despite the federal right to an Accounting of Disclosures (AODs) – the lists of who accessed our health data and why – technology systems violate this right to accountability and transparency.”

No doubt, Dr. Peel and Shah are correct. Yet, as healthcare data collection, management and analysis tools mature and become more mainstream, it is clear that buried within the ever-increasing tower of electronic rubble that is Big Data are insights waiting to be liberated.

It is becoming increasingly rare to find a clinician who would not agree that access to machine derived data and information has and will continue to have a positive impact on a variety of health outcomes.

To paraphrase Iya Khalil, co-founder of healthcare Big Data analytics company GNS Healthcare who was also a panelist on the above mentioned KCRW podcast “What-if scenarios for the future are more predictive and will rely more on precision medicine not on an “average” patient. Big Data gives this insight. Painting a more accurate picture of an individual’s health through more accurate data enables patients and doctors.”

The description of illnesses change over time along with the way individuals talk about their lifestyle or detail their personal narrative. Rather than focusing on structuring as much as possible like present day EHR solutions and billing systems would like to have us do, the need to capture each individual’s personal health narrative in their own “voice” is critical.

Moreover, individuals are more likely to recognize errors, mismatches and omissions – some of them potentially harmful – than institutions or machines. Individuals can and would be willing to verify information if engaged and properly incented.

The Solution: a True PHR System of Engagement

As mentioned in the Integrated Healthcare Data Repository (HDR) section above, there are at least 21 NoSQL Solutions Innovators that offer proven, scalable, secure, affordable solutions to augment or replace expensive, less flexible traditional databases that primarily rely on structured query languages (SQL) to extract information.

Example: PHR and Rare Illness Data Exchange Repository (RIDER)

PHR and RIDER Data Flows

The PHR/RIDER is a concept that combines at least two existing business models: A place for individuals to store and compare their PHRs and a secure database for exchanging multiple levels of information with other individuals, providers or other entities. The solution affords the individual with protection, choice and management tools at no cost other than their time.

The specific focus on rare illnesses addresses a need expressed by the NIH and others for an increased effort on collecting data from smaller health populations both in the U.S. and abroad where increasing and combining data sets may support additional insights and healthcare breakthroughs.

In part, the NIH states, “Rare diseases comprise a clinically heterogeneous group of approximately 6,500 disorders each occurring in fewer than 200,000 persons in the USA. They are commonly diagnosed during childhood, frequently genetic in origin, and can have deleterious effects on long-term health and well-being. Although any given condition is rare, their cumulative public health burden is significant with an estimated 6-8% of individuals experiencing a rare disease at some point during their lives.”

Fewer than 20% of rare diseases have registries – an indication that most pharmaceutical and biotech firms see little financial return in pursuing cures for rare or so called “orphaned” diseases.

The intent of RIDER is to manage multiple data sets of rare illnesses, or diseases, letting the machine do the heavy work of data abstraction and analytics to determine if any significant correlations exist between the data sets, and then making aggregate data available to the individual contributors as well as carefully selected healthcare providers or other members of the healthcare community.

Using mostly open source components including a NoSQL database, analytics and cloud computing infrastructure, small or large non-profit and for profit groups can more easily afford to implement a true, patient-focused portal that has lowering the individual’s costs and health outcomes as its primary mission.

PHR/RIDER Benefits

Savings and Cost Avoidance

  • Spend thousands not millions on integrating healthcare data
    • Provides Individuals with free access to PHI and health information
    • Lower clinical trial costs with supplemental data
    • Support and accelerate research efforts
      • Avoid time consuming manual workflows
  • Lower cost of care with supporting data
    • More quickly determine top treatment options
    • Eliminate need to gather PHI from multiple sources
    • More easily compare provider costs and efficacy

Improve Outcomes

  • Support clinical, research efforts with holistic data views, visualization
    • Run analytics against holistic data sets to improve treatment choices
    • Discover and predict needs for orphaned patient populations
  • Partner with providers, payers, pharma, HIEs on aggregated, anonymized data
    • Data to supplement clinical trials
    • Data to supplement payer wellness programs
    • Data to supplement academic medical center research
    • Data to supplement approved health informatics programs
  • Develop a true data partnership with your patients and their families


According to survey data recently released by the analytics division of HIMSS, patient portals and clinical data warehousing/mining are two of the top three new applications poised for growth among hospitals over the next five years. “The findings presented in this report suggest there is an opportunity for vendors and consultants to assist hospital leaders in their efforts to improve care by helping them realize their full EMR capabilities. Of the three applications predicted to dominate first-time sales in hospitals, the patient portal market opportunity is the only one clearly tied to the Meaningful Use Stage 2 requirements.”

Truly patient-centric solutions that support MU core objectives intended to improve patient communication, enable secure, authorized individual access to and transfer of personal health records (PHR), and extend functionality beyond the limits of today’s EHR/EMR solutions to support dramatically enhanced clinical informatics and MU mandated compliance capabilities will dominate the new healthcare IT systems sales beginning in 2014.

Newer approaches to lowering solution costs while improving functionality and ameliorating security concerns can be achieved by leveraging open source and NoSQL database and query technologies. In addition, standards, such as JSON for documents and unstructured text, which have been widely adopted outside of the healthcare industry and generally available, secure and maturing cloud services need to be strongly considered.

Finally, senior hospital management and providers of all sizes need to understand the inherent limitations of this generation’s crop of EHR/EMR solutions. Billing, practice management, quality reporting and meeting a number of other meaningful use requirements are extremely important objectives. However, buying into the hype that EMRs can properly function as the central repository for critical data consolidated from a dozen or more systems within the provider universe is misguided – at best.

Individuals and providers must work together to update, manage and secure healthcare data to increase the likelihood that information contained in medical records is used to improve individual wellness or aggregated to drive insights that benefit health populations. To that end, there are indeed viable, innovative and affordable solutions to pursue.


About Gary MacFadden

Gary's career in the IT industry spans more than 25 years starting in software sales and marketing for IBM partners DAPREX and Ross Data Systems, then moving to the IT Advisory and Consulting industry with META Group, Giga and IDC. He is a co-founder of The Robert Frances Group where his responsibilities have included business development, sales, marketing, senior management and research roles. For the past several years, Gary has been a passionate advocate for the use of analytics and information governance solutions to transform business and customer outcomes, and regularly consults with both end-user and vendor organizations who serve the banking, healthcare, insurance, high tech and utilities industries. Gary is also a frequent contributor to the research portal, a sought after speaker for industry events and blogs frequently on Healthcare IT (HIT) topics.
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