Clinical Director of Biomedical Computing, Cambridge University, Cambridge, England
Copyright 2001 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.2001American Medical AssociationThis is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
The integrated electronic medical record (EMR) is the next step in the evolution of health care delivery. There have been many attempts to create this tool. Nevertheless, an EMR that contains all of a patient's health data and allows information to be extracted for anonymous population-based epidemiologic studies remains elusive.
Inevitably, this record will change the everyday practice of medicine both for the individual and the population, but it will also revolutionize clinical research. It will allow researchers to ask questions about diseases that were previously been impossible to ask, and it may well lead to the discovery of tens or even hundreds of new diseases and allow reclassifications of existing ones. Although smaller subsets of data have been extremely useful and form the basis of traditional epidemiology, the real value of the integrated EMR is the ability to ask these types of questions on routinely collected clinical data from whole populations of millions of people. Gene chip–based molecular analyses of patients with complex clinical phenotypes will soon become commonplace, and researchers will need to be able to search across the EMRs of all patients to find those with the same subtle constellation of clinical features.
It is essential that there be an open and informed debate to determine where the balance lies between the use of patient data for research and public health management and the right of the individual to control personal privacy of the medical record. Much has been written on both sides of the argument; legislation has in general empowered the individual and caused anxiety among researchers. Nevertheless, objective studies of patients' views are sparse and find that most patients realize the value of well-controlled access to records. For example, a study of more than 200 000 patients at the Mayo Clinic, conducted in response to new legislation in Minnesota in 1997, found that more than 95% of patients, when fully informed, were willing to have their clinical information used in EMRs.1 Health care communities in industrialized countries are confronted by the technical, ethical, and social challenges created by these issues.2 Standards that support data integration and security and are inherently scalable to the size of a whole population will need to be developed. These standards must also be able to evolve quickly to embrace new technology or statutory changes in data access control rules. Researchers will require new search tools with algorithms capable of trawling this type of relatively "messy" clinical data.
Researchers, clinicians, and health care providers are seeking a suitable social and political environment in which to develop a prototype population-based, patient-owned record. The United States leads in the overall investment in infrastructure and the general level of acceptance by clinicians of the value of information gathering in clinical practice. Unfortunately, in the United States, health record systems are focused around the financial drivers in health care and consequently the clinical population data are balkanized among individual health care providers. In contrast, in the United Kingdom, as in much of Europe, a unified health care system in the National Health Service has led to the introduction of a unique patient identifier for everyone in the population. New European legislation ensuring patient empowerment mandates that there is specific consent obtained for how clinical information may be used both in medical care and research.3 This, when combined with a number of British government imperatives establishing data communication standards and the Health and Social Care Bill currently before the UK Parliament to address the issue of control of anonymized access to population data,4 serves to create the ideal environment to develop an integrated EMR.
The United Kingdom has begun to capitalize on these opportunities with a number of initiatives at the local level coordinated nationally by the National Health Service Information Authority, which will develop and test the necessary prototypes.5 The Electronic Record Development and Implementation Programme and others such as the Eastern Region Electronic Health Record Consortium,6 a partnership of academics, industry, and the health service led by the University of Cambridge, are closely linked with national public debates on the ethical use of data for clinical studies and patient care. These can succeed only by combining public debate with the introduction of technology.
It is still early, but during the next decade some form of patient-owned EMRs for entire populations will likely be introduced. The impact this will have on clinical practice and our understanding and classification of disease could possibly be greater than the effect that molecular biology has had on medicine during the last 10 years.
Rashbass J. The Patient-Owned, Population-Based Electronic Medical Record: A Revolutionary Resource for Clinical Medicine. JAMA. 2001;285(13):1769. doi:10.1001/jama.285.13.1769-JMS0404-7-1