Patient Engagement and Consumerism - Translational Informatics: Realizing the Promise of Knowledge-Driven Healthcare - page 153

and a catalyst for translation, becomes increasingly important. Patient-initiated
activities will be particularly interesting in how they can improve research and
health of individuals.
Discussion Points
￿ How do the different stages of a clinical trial where patients may be more or less
engaged? What barriers exist at each stage that would lead to patients not
engaging?
￿ For what reasons may patients want or not want to participate in clinical trials.
What types of information might affect these reasons?
￿ What are the possible biases that can occur as more patients become engaged in
the research process? How could research studies mitigate against these biases?
￿ How can the results of a study best be presented to a patient who participates in
the trial? How would this be different than results for patients who did not
participate?
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