By Patricia Flatley Brennan.
As the health community continues to comment on Meaningful Use, keeping a central focus on the patient – the ultimate end user of health information – will insure that HIT becomes meaningfully useful as a contribution to the health of individuals, patients, and families. We at Project HealthDesign believe that accomplishing this goal requires three things:
1. Health information technologies and policies that enable the integration of patient defined and generated information into clinical care
The flow of information about an individual’s health should go two ways – not just from providers to patients but also from patients, who are experts about their daily activities, to providers.
One of the key insights from the first phase of Project HealthDesign is the importance of collecting information that is not typically part of a patient’s medical record or clinical interactions but is critical to managing an individual’s health. Such patient-defined observations of daily living (ODLs) can help providers to better understand patients, determine whether a treatment is working, and adjust therapies accordingly.
Any health information systems architecture that supports electronic health records or electronic data exchange should have sufficient flexibility to accommodate changing ODLs and permit inclusion of a wide variety of patient defined, acquired and generated information types.
2. Health information must be accessible to patients in a computable form
Project HealthDesign’s grantees and numerous private sector companies have been developing applications and services designed to let patients use health data in innovative ways, whether via PCs, mobile devices, online communities or other means. Regulations should require that data generated by the health system (and also by PHR providers) be available to patients in a form that can be read by a computer program and manipulated and integrated with other information. Merely seeing health data on a screen, or downloading it in a PDF or other locked file format, will not let patients use information in ways that are most valuable to them.
3. Health information for patients must be actionable
Heath information forms the basis of healthy action. This point is central to the Project HealthDesign overarching vision. Personal health information must be meaningful to patients as they make decisions about their own health care. Specifically, information in patients’ personal health records must be available to them in terms they can understand and with tools that assist patients in making good decisions about their health. Simply providing electronic access to raw data, does not ensure that patients can use the information to make decisions about how to manage their health.
If a key purpose of the emerging regulations is to “Provide patients and families with timely access to data, knowledge, and tools to make informed decisions and to manage their health” – sufficient attention needs to be paid to creating not only provider incentives and data exchange mechanisms, but the decision logic and visualization tools that help patients to understand the data. As the discussion about meaningful use continues we must all keep the focus on the ultimate user—the patient!
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