More than a decade into the 21st century, a medical appointment or hospital stay for the vast majority of Americans still involves doctors and nurses poring through a paper chart that contains their medical history. Patients are acutely aware that their medical history is trapped within these paper records that are stored in individual hospitals and physician offices. We are resigned to filling out the same forms each time we see a new care provider. In the unfortunate case of a complex illness, patients and their families often cart around binders of records to ensure that all relevant information is available to the care provider.

Julia Adler-Milstein

Julia Adler-Milstein is an assistant professor in the School of Information and the School of Public Health. Her research focuses on policy and management issues related to the use of IT in healthcare delivery. Her expertise is in health information exchange and she has conducted three national surveys of health information organizations.

Our paper-based approach to health care delivery is fraught with potential errors and inefficiencies. A handwritten prescription can result in an accidental overdose. If the patient is referred to a specialist practicing in an unaffiliated institution, the specialist cannot easily access the patient’s medical history or electronically communicate results of the assessment back to the ordering physician. If a patient goes to a laboratory for a blood test, the results may never get into the patient’s chart, and even if they do, they are rarely available in other settings in which the patient may receive care, leading to duplicate tests and suboptimal clinical decisions.

It is a crazy system and everyone knows it. So why, even in care settings with electronic health records, is your health information not following you? The answer, it turns out, is a complex mix of incentives, technology, laws and regulations, and organizational culture.

Health Information Exchange (HIE) is the act of sharing clinical data among providers (physicians, hospitals, nursing homes, etc.) who are not part of the same organizational entity. Despite widespread agreement on the potential for HIE to improve the quality and efficiency of healthcare, there is an array of barriers.

The first barrier relates to data privacy and security. Health information is particularly sensitive and we lack an established approach to ensure that only authorized care providers gain access. In addition, when healthcare organizations agree to share their data electronically, there is uncertainty about the legal ramifications of a data breach or unauthorized access, making these organizations wary to engage in HIE.

The second challenge is that physicians and hospitals are concerned about the competitive implications of sharing their data, which may make it easier for patients to seek care from rival institutions. Hospitals view clinical data as “a key strategic asset, tying physicians and patients to their organization.” (Grossman et al. 2008) While competition leads to many good outcomes in healthcare, increasing electronic exchange of health information does not appear to be one of them.

Perhaps the biggest challenge to broad-based HIE is convincing clinicians to demand these data and use them when they are available. Physicians are accustomed to making clinical decisions with incomplete information and the notion that they would be responsible for reviewing patient data from all past clinical encounters is daunting. Smart analytic tools that sift through the terabytes of data that HIE will generate and present what is valuable to clinicians at the point-of-care are not yet ready for primetime.

The list of barriers goes on, making it clear why, even with widespread agreement on the value of HIE, we are still far from it being a reality. Is there hope that this will change? The good news is that the government is directing substantial resources to expand HIE in the U.S. Each state has received federal funding under the State HIE Cooperative Agreement Program to determine how to increase the exchange of health information. Two years into this program we are seeing signs of progress, but whether these state efforts will be able to overcome all the barriers to HIE remains to be seen. So, for now, sharpen your pencils and expect to keep filling out those forms.

VIDEO: Julia Adler-Milstein discusses her research