Unfortunately, the results of such queries are PROVABLY INCORRECT. This type of distributed database architecture violates a basic computer science principle: Distributed databases only produce correct query results if the data in each node is independent (Weber G: Federated queries of clinical data repositories: the sum of the parts does not equal the whole. J Am Med Informatics Assn 2013). Of course this sounds like (and is) technical jargon, so let me decode and explain it.

The easiest way to understand this concept is with a simple example. Let’s say you want to know how many patients have both diabetes and high blood pressure. You send a query to multiple databases saying “Tell me how many patients you have with both diabetes and high blood pressure.” The problem is that you don’t know whether or to what extent data about the same patient appears in multiple databases. Each database only reports the count of the number of patients that satisfy the query, but there’s no identification information included. So if John Brown, who has both diabetes and high blood pressure, has been seen in two different institutions with databases, then John Brown will be counted twice. If Mary Jones, who also has diabetes and high blood pressure, has been seen by two different institutions, but one only recorded the fact that she has diabetes and the other that she had high blood pressure, she won’t be counted at all (even though she should be).

So, as you can see, this method of querying multiple databases and adding up the counts results in both over- and under-counting – i.e., INCORRECT results. And the errors can be quite substantial, with large and unpredictable mistakes. This is because most patients receive their medical care in multiple places, leaving data at each. The medical records in one location may be complete (possibly leading to over-counting) or incomplete (possibly leading to under-counting), with no way to know in advance whether these two types of errors will balance or not for any specific query.

So how does the concept of “independence” fit in? In this case, one database is independent of another if all the data for each patient is in one and only one database. In other words, no patient has data in multiple places, so the data in each database is “independent” of all the others. In such a case, where you know that all of each patient’s data is in one and only one database, a query to multiple databases will produce correct results. This is because the decision about whether a given patient meets the conditions of the query is made based on complete data, and each patient’s data is only considered once.

Does this mean that all these systems mentioned above are useless and should be discarded? Not necessarily. The results of queries to these distributed (but not independent) systems may still occasionally provide some helpful insights into medical phenomena. In a few cases, the possibility of over- and under-counting may not be critically important. For example, if we are looking for events that should not be occurring at all (like administering penicillin to patients who are allergic to it), any such events that are found are significant. But we must always realize that the quantitative query results are not accurate (or necessarily even close). Otherwise, we may draw potentially dangerous conclusions, such as finding a disease outbreak when none exists, or misallocating resources based on artificially high or low estimates of the number of people affected by a given disease – in other words, “big data” gone bad.

Finally, how can we avoid these problems? The best approach to avoiding incorrect query results from distributed medical information systems is to compile a comprehensive copy of all the records for each patient from all sources in a single place (but not necessarily the same place for everyone). The institutions that do this are known as health record banks, patient-controlled repositories of electronic health records. This totally avoids the potential for erroneous counts in response to distributed queries. With health record banks, we could actually have an effective and efficient system for aggregating patient information for research, policy, and public health.

In addition, health record banks provide many other benefits, most importantly to patient care. The availability of comprehensive electronic patient information when and where needed can both improve care and reduce costs. With health record banks, such information is available and ready to be retrieved by providers with a single query. Leaving patient information where it’s created and putting it together when needed is both inefficient and prone to error (Lapsia V, Lamb K, and Yasnoff WA. Where should electronic records for patients be stored? Int J Med Informatics 81(12):821-7, 2012).

So why are we continuing to invest in a “federated” architecture for health information infrastructure that doesn’t work? It’s time for the health IT community to shift their efforts to building health record banks – for both patient care and research.

This information was also presented in an earlier Viewpoint article, “Putting Health IT on the Path to Success” in the Journal of the American Medical Association (subscription required for full access).

On reflection, it’s really not surprising that as physicians adopt electronic records, reimbursements, which are currently based on the quality of documentation, are increasing. The improvements in that documentation resulting from electronic records naturally increase payments. Ultimately, we need to change the health care payment system from rewarding activity to rewarding good care. But how can we realistically do that unless comprehensive patient information is available to accurately assess whether the care provided is truly appropriate?

Imagine an aircraft maintenance system where individual planes are repaired in various airports around the country, but all the repair records remain where the work is done. No mechanic would have access to the complete repair history of any plane. Crazy, right? Yes, but very much analogous to how we handle health care records. Wherever you receive care, a record – be it paper or electronic – is left behind, and no doctor has ready access to your complete history. It’s no wonder that healthcare costs are so high and that there are so many avoidable medical errors and adverse events.

Just making all medical records electronic will not solve this problem. We also need to create a mechanism to aggregate all your scattered records into a complete whole when they are needed. Of course, this must be done in a way that protects patient privacy, and ensures that medical record access is only available with your permission.

A simple, but largely unexplored, solution to this problem is the community health record bank. Such a health record bank would provide each person with a free account where copies of all their health records would be deposited when they are created. All access to the medical records in each account would be controlled by the patient to protect privacy. A nonprofit patient-governed community organization would run the bank, and it would be paid for by new and innovative uses of your health information with your permission. For example, most people would gladly pay a few dollars a year so that their loved ones would immediately be notified if their health record bank account were accessed by emergency medical personnel – meaning that emergency care was being given.

How would this help reduce healthcare costs? The anticipated efficiencies and improvements from electronic records will not primarily come from making the existing silos of paper records electronic – rather, the savings will result from having comprehensive records for each patient available when and where needed. For example, how can unnecessary duplicate tests and procedures be avoided without access to all the records of each patient?

So why hasn’t this straightforward health record bank solution been implemented? The simplest explanation is a “failure of imagination.” In our current record system, when a provider finds out that there are needed records at another provider site, those records are requested and (hopefully) transmitted – albeit typically by fax. Much of the current work towards electronic “health information exchange” has been directed to automating this process. However, it is very difficult, complex, and expensive to assure complete patient records by instantly finding, retrieving and integrating them from the various locations where they exist (more on this in a future blog). And, to make matters worse, while the health record bank solution is good for everyone, none of the existing healthcare stakeholders can easily take on this responsibility because they would not readily be trusted to avoid using the information to gain an unfair competitive advantage. Finally, patients, who would benefit most, typically do not have an effective voice when these issues are considered.

So if we are to really get the benefits of electronic medical records, and take advantage of their significant potential to improve the quality and lower the cost of healthcare, we need to begin implementation of a solution that will really solve the problem — like health record banks. Comprehensive electronic health records are an essential prerequisite for controlling health care costs while ensuring quality. Of all those concerned about these issues, who will step in and provide the seed funding needed to solve this problem?

Folks watching this blog know that it’s been quite a while since I’ve posted anything (almost two years!). It’s not because I haven’t had anything to say — rather, I’ve been busy taking my own advice. Specifically, it’s been clear to me for some time that the key problems that need to be solved to enable access to comprehensive electronic patient records when and where needed are: 1) privacy; 2) stakeholder cooperation; 3) making all the medical records electronic; and 4) financial sustainability. A health record bank can solve all these problems, provided it has the right business model. Which brings me back to Phoenix …

The eHealthTrust health record bank is offering lifetime accounts for a one-time $99 fee. Ongoing revenue comes from optional reminders and alerts, such as the “peace of mind” reminder that instantly notifies your loved ones if your HRB account is accessed by an ER physician. eHealthTrust also will be providing free EHRs for office-based physicians in the Phoenix area (or subsidies for existing systems) to ensure that all the records become electronic. We anticipate working very closely with the local Regional Extension Center (REC) to help physicians make the transition to EHRs and meet the Meaningful Use criteria so they can take advantage of the substantial Medicare and Medicaid subsidies over the next few years ($44,000 for Medicare and $63,750 for Medicaid).

What do eHealthTrust members get for their $99? A secure, electronic “safe deposit box” for their medical records that will be automatically populated over time. Initially, medication and some laboratory data will be loaded, along with a problem list from their primary care physician (if available). Later, more lab data along with hospital discharge summaries, imaging and pathology reports, and encounter reports from physician EHRs will be added (as connections to data sources are made and more physicians adopt EHRs and link them to the HRB). We will also be working to make HRB records available to EMTs while they are traveling to the site of a 911 medical emergency.

What about privacy and security? All access to eHealthTrust information is with the permission of the member, so each member gets to set their own privacy policy. The data are stored in an ultrasecure data center with backup power and Internet connectivity to assure both security and availability.

Why should you care? If you are in the Phoenix area, you should go to the eHealthTrust web site and sign up now. Then you will be able to have, for the first time ever, a secure and private place where your medical records will be available, under your control, to share with your health care providers (and family, too, if you wish).

What if you’re not in the Phoenix area? Hopefully, a health record bank will be coming to your community very soon. More importantly, the success of eHealthTrust in Phoenix will mark the beginning of the solution to the problem of delivering comprehensive electronic patient records when and where needed — which has been a national priority since the President created the Office of the National Coordinator for Health Information Technology in 2004. Lack of availability of such records results in duplicate testing and procedures, as well as costly (and sometimes dangerous) medical errors. There is good evidence that more complete information will both reduce costs and improve quality — which would certainly be good news for health care.

So watch this space for further developments about health record banking — and join us in the hope that this will be a major step forward for health care not just in Phoenix, but across the entire country.

I think these issues are particularly timely and relevant since funding for health information technology is being included in the Economic Recovery bill currently being drafted. Funding alone will not solve this problem; the expenditures must be directed towards a feasible and sustainable system.

In brief, the Federal Government should take four steps to create an effective health IT system that delivers complete patient records at any point of care:

I believe that these policies will lead to an effective, self-sustaining, private-sector health IT system that provides heavily subsidized EMRs to all physicians and fully protects individual privacy.

There are more details about these and related issues in the new book just published by HIMSS entitled, “Personal Health Records: The Essential Missing Element in 21st Century Healthcare” which I co-authored with Holly Miller, MD, MBA, and Howard Burde, Esq. It provides a comprehensive overview and discussion of the many issues pertaining to the adoption and use of personal health records, with chapters on PHR architecture (including the health record bank model), PHR law, and PHR business sustainability models.

In this posting, I wanted to respond to a few FAQs about the policies I’ve recommended.

How much would your plan cost?

Since there are about 100 million Federal health beneficiaries, the new HRB account benefit of $12/person/year would cost a maximum of $1.2 billion/year (if everyone signed up). This amounts to 0.2% of health care costs. Conservative analyses can easily demonstrate health care cost savings of 2% as a result of HRB accounts through improving chronic disease management and avoiding preventable hospitalizations due to outpatient adverse drug events, duplicative imaging studies, and unnecessary repeat laboratory work. This 2% total savings amounts to ten times the proposed payment for a health record bank account. But even if these estimates are grossly inaccurate, the savings most certainly will be at least as great as the expenditures, not counting additional value from more timely and complete availability of information to medical researchers, public health officials, and policymakers (with consumer consent).

Won’t a health record bank cost more to operate than your $1/person/month estimate?

The recent Center for Information Technology Leadership report on Cost and Value of Personal Health Records (PHRs) estimates the cost of an “interoperable PHR system” (i.e., a health record bank) at $8/person/year if there are 500,000+ subscribers. My own data shows that the cost will be about $6/year (50¢/person/month) with 1 million subscribers. So the estimate I use of $1/person/month is, if anything, a bit too high.

How much will it cost to subsidize electronic medical record systems for physicians?

To subsidize each physician at the rate of $5,000/yr for an Internet-accessible EMR system (which would cover most of the EMR system cost) would require about $10/person/year. The way I get $10 is that there are about 600,000 physicians and 300 million total population in the U.S. Therefore, there are about 500 people/physician — therefore, to get $5,000/physician, the cost/person is $10.

What is the business model for a health record bank?

Revenue would be about $5/year from advertising to consumers (like the advertising you see on Google) and $12/year from reminders and alerts, for a total of $17/year. The reminders and alerts would be services such as: 1) notifying you instantly if the HRB account of any of your loved ones is touched by an emergency room physician; 2) “prevention advisor” giving you reminders of anything you need to do to stay healthy (e.g. colonoscopy, etc.); or 3) medication reminders (for each dose and/or for refills). The first two would be paid by consumers (or perhaps even by health plans), the last one by pharmaceutical firms. In any case, I think $1/person/month (or $12/year) in revenue for all reminders is very conservative, even allowing for the fact that some consumers will not want to pay for any of them.

Expenses would be $6/year for the basic operation of the bank and $10/year to subsidize each physician in the amount of $5,000/year for an Internet-accessible EMR system.

With revenue of at least $17/year and expenses of only $16/year, a health record bank is profitable. And this analysis includes not only the cost of the HRB itself, but also subsidies for all the EMRs for physicians. Finally, note that I have not invoked (or tried to capture) a penny of health care cost savings in this business model.

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In summary, health record banking provides a self-sustaining, private-sector health IT solution that can deliver complete patient records at any point of care, subsidize EMRs for physicians, and fully protect privacy. While it is highly likely that HRBs will result in substantial health care savings, their financial sustainability is based solely on the new value that they create for consumers.