Patients need access to their health care data and health care consumers need access to their health care information. Data and information are not the same. Data is akin to the ingredients for a meal, while information is more like the meal. Imagine ordering a meal in a restaurant. The wait staff brings the ingredients to your table. You still need a chef to prepare the dinner. This is much like the current patient portals where patients may access lab values, radiology results, and provider notes — the ingredients. But what is one supposed to do with that data? The data still requires a provider to interpret and create the care plan. Converting data to actionable information — much like converting ingredients into a palatable meal — requires expertise and intervention outside the patient or diner.
The affordable care act (ACA) requires patient access to health data and the promotion of patient engagement. Patient portals, to date, have not been terribly successful at improving health participation and outcomes. Federal government involvement with advancing interoperability and refining access points, such as the patient portal, continues yet lacks a clear mandate. This is likely due to the dearth of guidance on what the endpoint is — on what effective translation of data into actionable information looks like.
The answers to the problem of patient engagement with the portals and long-term improvements in health outcomes lie with the sciences outside of medicine. Social sciences, learning theory, and studies on intuitive design likely contain needed answers. Patient portal designers should think about information transmission and effective communication, not just about data sharing.
Communication is both the sending and receiving of information. Data is as difficult to receive and act upon as the ingredients of a meal because much work is left to be done. Information is palatable, actionable, and leads to measurable results in the short and long term.
Patient platforms ought to be intuitive in design and execution, utilizing pictures, animation, mapping, and data-point conversion into meaningful associations with body systems. Developers will be well served to learn from the social sciences, learning theories, and from every 4-year-old using an iPad.
Christopher Noll is a nurse and risk manager.
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