For most of our lives; physicians, hospitals, and insurance companies have used paper medical records. They controlled the flow of data, but allowed patients and others access to their records.
Over the past few years our medical records have gradually moved to the cloud. This is a consequence of the Obama Administration addressing the massive budget deficit and reviving an antiquated healthcare system. Obama’s National Commission on Fiscal Responsibility and Reform identified defense, interest on the national debt, and healthcare costs as its major targets to address the huge budget deficit. To address the healthcare component, Obama unleashed a controversial health plan and also wants to overhaul the current infrastructure for medical information. The President also signed The American Recovery and Investment Act (2009) which allocates roughly $20 billion of the $787 billion in stimulus funds towards equipment and technical support enabling the transition to digitized medical records.
Digitized or electronic medical records (EMRs) will provide a seamless way to manage the health data from pharmacies, doctors, hospitals, and insurance providers. With a unique medical identification number, each patient’s personal statistics, demographics, lifestyle, and medical history including lab tests, immunizations, allergies, medications, and health insurance information are accessible in a centralized format, wherever needed.
EMRs will, in theory, provide more reliable and higher quality healthcare and reduce medical costs. Sharing medical data will hopefully eliminate hundreds of thousands of medical errors annually and provide better management of medical data in clinical treatment and medical research accelerating medical discoveries. According to a RAND Corporation study (2005), savings from EMRs could reach $77 billion per year. With the ability to eliminate mass volumes of paper and storage costs, administrative tasks, red tape, and the duplication of procedures; the savings are passed on to patients.
Obama has set a goal of having a nationwide system in place by 2014. In order to help with the financial burden of the transition from paper records, Obama is using a carrot and stick approach with the stimulus money to ensure a smooth transition. For doctors and hospitals to receive stimulus money for their computer equipment, they must meet government standards for recording patient’s data and for sending prescriptions and exchanging patient data between clinicians electronically. Starting in 2015, doctors and hospitals using Medicare are subject to financial penalties for not meeting these standards.
According to property law specialist Mark Hall of Wake Forest University Law School, although the law does not consider medical information property, it gives EMRs that distinction. So, who actually owns your electronic medical records? Currently, the answer to this question is somewhat vague even to experts in the field. Policymakers are, however, attempting to answer this question. The perspectives from experts and activists on who should own EMRs are related to their positions on policy issues related to EMRs.
For those whose concern is with privacy protection, patients should have control of who sees their medical data. A medical records network will require safeguards for unauthorized access similar to online banking. In addition, there are issues with authorized access. For physicians it is not always practical to obtain consent while providing medical care, for example, in emergency room situations or if the patient is unconscious. Also, after medical professionals perform services, in order to verify claims it is necessary that insurance and billing personnel, both government and private, have access to medical records. Even with different levels of access to EMRs, Deborah Peel of Patient Privacy Rights points out that currently self-insured employers can access employees’ entire health records.
Although the primary use of medical records is to treat patients, the medical community also uses EMRs for mining data in clinical care research. If medical data is anonymous, patients can no longer claim ownership. The Health Insurance Portability and Accountability Act (2003) allows anonymously sharing patient medical data with related healthcare businesses. This includes organizations that possess medical information selling it anonymously to resellers. Marc Rodwin, a Professor of Law at Suffolk University, discloses in JAMA that IMS Health, the largest reseller, made $2 billion in 2006. For Rodwin who has pragmatic concerns related to the benefits of mining data, EMRs should become public property. He argues that with private ownership the interests are with the data sellers, not the public and that private companies are reluctant to let competitors use their clinical data.
Kevin Schulman of Duke University’s Medical and Fuqua Business Schools, and Mark Hall argue in JAMA that for developing EMRs, the current situation is the worst of two worlds. Current laws, which are at the state level, favor protecting the patient and the clinician’s economic interest limiting access to health records. As a result, the low commercial value to patients and the restricted access create barriers to forming integrated electronic records. Schulman and Hall advocate letting markets determine the best use of the EMRS which is more efficient than allowing courts or regulatory agencies to decide.
The U.S. Constitution’s Fifth Amendment prohibits the state from taking property without compensating owners. Given that EMRs are property with economic value, how can policy makers create an infrastructure that is financially self-sustaining and no longer requires government/taxpayer support?
Heritage Foundation’s Edmund Haislmaier suggests, “The best way to induce patients and providers to share the individual data they create is to help them unlock the value of that data and share in the benefits derived from letting others use it. The idea is to create market mechanisms for rewarding those who control access to medical data and place those rights in a stream of commerce for the highest and best use. By commercializing the medical records through bundling rights to patients and clinicians, they could receive the profits in return for release in to the network.”
Hall and Schulman observe that for developing our property laws, lawmakers use our fundamental rights and society’s economic goals. In response to the policy issues associated with EMRs, Representative Paul Ryan of Wisconsin and Representative Dennis Moore of Kansas introduced legislation in the House and Senator Sam Brownback of Kansas in the Senate known as the Independent Health Record Trust Act (2007).
Under this proposal, consumers own and have control of their health records. Similar to the current banking infrastructure, the proposed trust requires obtaining a patient’s consent before releasing health information to hospitals, doctors with exceptions for emergencies where patients authorize limited amounts of information. With patient control, electronic medical records will potentially become more secure than paper records. The proposed trust is also financially self-sustaining. It can generate revenue through the sale of non-identifiable health data for research by charging account fees to those who use them. Unfortunately, the bipartisan bills did not receive enough votes to pass.
Consequently, although EMRs are government mandated, a number of policy issues remain unresolved. PACeR, the Partnership to Advance Clinical Electronic Research, a pilot program in New York State has developed a business model based on the failed legislation. The non-profit partnership between medical centers, patients, and pharmaceutical companies developed a medical data network and hopes to discover how researchers can mine the data and manage patients in the most efficient manner and remain financially self-sustaining.
Again ... who is the "owning" entity with respect to the electronic data base and who will be responsible for managing the interconnected network to make all this real?
I don't want to rain on anyone's parade here, but how is this supposed to happen? "Sharing" is such an easy word to use when you're marketing a computerized solution, but it's amazingly difficult to pin down when we're talking about responsibilities.