In February 2009, Congress passed the Stimulus Bill, which included nearly $150 billion for healthcare. Of this, $36.5 billion were allocated to health information technology, and most of that was targeted to electronic health records (EHRs), a.k.a., electronic medical records (EMRs). EHRs are computerized records of patient medical histories that track information about physicals, office visits, medical diagnoses and treatments.
In the not-so-distant future, electronic health records will be widespread and will establish the foundation for developing a national disease registry (NDR). NDRs are centralized, disease-specific databases used to study medical treatments and the quality of their outcomes. Carefully developed NDRs offer reliable, unbiased data for analyzing and determining “Best Medical Practices.”
National disease registries create opportunities for improving health care quality and reducing medical costs. For example, small medical groups--traditionally without access to large medical record databases--could use NDRs to examine nationwide medical data and identify the most effective treatments. In turn, patients could receive faster, more effective care, while eliminating the cost and pain associated with slower, less effective measures.
Breast cancer research is another example. This research originates in urban academic centers where demographics are drawn predominantly from urban residents. Many suburban hospitals do not participate in the research, so it is nearly impossible to examine a broader sweep (e.g., a population group that includes suburban residents). Broader study groups will expand our body of medical knowledge. (Britt Berrett, Ph.D interview excerpt from EMR documentary)
Comparative Effectiveness Research
The Stimulus Bill also allocated $1.1 billion to “Comparative Effectiveness Research” (CER). With CER, medical researches compare treatments and determine which work best for individual patients who have specific medical problems.
Although the medical community has engaged in such research for years, our current databases do not represent nationwide demographics. Instead they reflect the experience of subgroups. The data is biased because it includes some population groups while excluding others. Experts agree it’s dangerous to assume that information extrapolated from subgroups necessarily applies to all groups.
The major databases and research presently available have taken years to develop. Additionally, use of the data is restricted to a few centers. Further, they do not provide large enough samples to indicate best treatments for all patients. A database that incorporates a nationwide population of data would facilitate previously inconceivable medical analyses. By grouping patients according to treatments, and a variety of their individual attributes (age, gender, birthdates, etc.), we could better compare treatment outcomes and decide which are the most effective for different populations.
NDRs also could help identify rare diseases, recognize early stages of infectious epidemics, and better assess new treatment effectiveness.
The Tradeoff--Medical Effectiveness vs. Individual Privacy
It’s time Americans understand we are trading off improved medical care and higher medical costs for “privacy.” How many would be willing to trade some personal privacy for a better, less costly medical system? The Congressional Budget Office has estimated that $700 billion could be saved annually by identifying best treatments, but U.S. privacy laws inhibit healthcare facilities from sharing patient information with each other. (The Clinton administration proposed using a national patient identifier, but it was not accepted due to privacy concerns and loss of control of proprietary medical information.)
“De-identified Data” is the present standard applied to data used by medical researchers. This means that all information which could identify an individual is removed before it is sent to a centralized disease registry. De-identifying data complicates the evaluation of treatment effectiveness, resulting in less reliable assessments. In turn, the U.S. government’s and its citizens’ healthcare dollars are not spent effectively and we are not getting the best care possible. Considering our ever-increasing healthcare costs and ongoing concerns about quality medical care, many believe this is not acceptable. We simply cannot establish best practices without sufficient data.
To engage in more sophisticated analyses of clinical decision-making, a structured terminology is needed, e.g., a master person patient index (MPI), which is much harder to develop after data is de-identified. (Duwayne Willett, MD interview excerpt from EMR documentary)
From http://healthinformatics.wikispaces.com/Master+Patient+Index, the “Master Patient Index (MPI) is a database that maintains a unique index (or identifier) for every patient registered at a health care organization. The MPI is used by each registration application (or process) within the HCO to ensure a patient is logically represented only once and with the same set of registration demographic / registration data in all systems and at an organizational level. It can be used as enterprise tool to assure that vital clinical and demographic information can be cross-referenced between different facilities in a health care system. A MPI correlates and cross-references patient identifiers and performs a matching function with high accuracy in an unattended mode. A MPI is considered an important resource in a healthcare facility because it is the link tracking patient, person, or member activity within an organization (or enterprise) and across patient care settings.”
As we move to nationwide, electronic records and debate solutions for lowering health care costs and providing better care, Americans must consider the value of a national registry.
This article is drawn from material in the EMR documentary produced by Metamorphoses Productions. The documentary is available for $19.95 at http://www.emrd-ndr.net/.
Additional information about Metamorphoses Healthcare, a non-profit organization, is available on Facebook and Twitter:
http://www.facebook.com/pages/Metamorphoses-LLC/124684334306232
Twitter, send messages to: @ MetamorphosesCo
No comments:
Post a Comment