Information Technology Reference
In-Depth Information
Chapter 9
Patient Engagement and Consumerism
Adam B. Wilcox
By the End of this Chapter, Readers Should Be Able to
:
To understand the importance of the patient role in translational informatics
To identify examples of how patients can be engaged
To understand risks to patients and how patients can be protected
To recognize trends and factors in patient engagement
To identify potential risks to translational informatics from patient-driven
activities
9.1
Introduction
Throughout the previous chapters, there have been many components that are
directly related to patients. In reality, all of translational informatics is related to
patients, since the ultimate goal is to improve the health and healthcare of patients.
But some parts of the fi eld are more directly related than others. De-identifi cation
algorithms that allow a large set of medical records to have protected health infor-
mation removed, so that the dataset can be transferred to other scientists who are
applying data mining algorithms that can discover associations between groups is
ultimately related to patients, since those associations may eventually lead to new
treatments. But it feels comparatively more distant to patients than a website that
helps them directly to enroll in clinical trials related to their conditions. Other initia-
tives, such as mining the bibliome (Chap.
5
) and Big Data (Chap.
7
) feel even more
distant. Some translational informatics projects are fully dependent on patients and
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