SCAPE: Sustainable Communities and Place-based Education

Project: Research project

Description

Little is known about data sharing preferences of patients with behavioral health conditions (BHCs) and even less is known about the choice of patients with Serious Mental Illness (SMI). Our hypothesis is that, instead of wanting the currently used broad consent models, behavioral health patients want a greater degree of choice to determine at a granular level which health information (in particular, sensitive information) to share for care and research. The main goals of the proposed research are to address the open challenges of: (1) identifying categories of sensitive health information that are meaningful for behavioral health patients, (2) specifying the identified categories of sharing choices in a precise and uniform way by linking them to standard medical terminologies, (3) deploying and testing an electronic informed consent management tool, that we call My Data, My Choice!, that supports tiered-consent models, (4) helping BCH patients to intelligently exercise granular control by embedding into My Data, My Choice! educational material on the type of information contained in each data category and potential favorable and unfavorable consequences of restricting data access for care, and (5) deploying and testing a Trusted Broker to support patients optional sequestering of data for care and research. At the end of the study we will recruit 300 patients with BHCs (30% with SMI) to conduct an evaluation study to compare differences in sharing options and levels of comprehension and consent. Participants will be randomly assigned to: (i)intervention arm: the recruiter will be someone involved in his/her care, and the participant will periodically receive notifications of updates to his/her EHR, (ii) control arm: the recruiter will not be part of the facilities care team, and the participants will not receive notifications of updates to his/her EHR. During 12 months the clinical staff at the participating facilities will use the Trusted Broker to access clinical data from study participants. Participants will be able to use My Data, My Choice! to change their sharing options.
StatusFinished
Effective start/end date6/1/165/31/18

Funding

  • US Environmental Protection Agency (EPA): $192,200.00

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Education
Health
Research
Information Dissemination
Patient Preference
Informed Consent
Terminology
Health Status
Exercise