Using Patient-Centered Guidelines in a Technology Platform to Improve Health Care in Adults with Sickle Cell Disease

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The overall goal of this proposal is to prepare the principal investigator (PI) to become an independent investigator with the career goal of developing health information technologies (Health IT) to improve disease- specific knowledge in individuals with sickle cell disease (SCD). SCD is an inherited disorder of hemoglobin that affects over 100,000 Americans, most of whom live in low-resourced neighborhoods. Acute SCD complications result in 230,000 emergency department visits and $1.5 billion annually in acute-care expenditures. Prior research indicates that increased disease-specific knowledge correlates with improved clinical outcomes in SCD. Thus, targeting strategies to improve disease-specific knowledge is a high priority in the care of individuals with SCD. Significant evidence describes how educational materials, including online educational programs, can be used to increase disease-specific knowledge. In this proposal, the PI will develop and evaluate a mobile phone technology intervention based on the prior evidence that technologies can improve SCD-specific knowledge. The PI proposes a career development plan that includes a mentored research experience with internationally recognized mentors with expertise in SCD, qualitative methods, consumer health informatics, and user-centered design. The PI has done the following in preparation for this application: (1) attended pediatric and adult hematology clinics at the Vanderbilt University Medical Center; (2) partnered with the Sickle Cell Foundation of Tennessee and Sickle Cell Disease Association of America, our local and national community based organizations to obtain input from adults with SCD about knowledge gaps in their disease and to provide feedback about technology; (3) adapted 2014 NHLBI guidelines to be patient- centered, understandable, and actionable based on input from the community; and (4) initiated a collaboration with Cincinnati Children’s Hospital, developers of iManage, a mobile health application (mHealth app) designed for individuals with SCD. The goal of this collaboration is incorporating the patient-centered version of the 2014 NHLBI guidelines into the app. The PI is a pediatric and internal medicine board certified physician and biomedical informatician, with expertise in developing and evaluating Health IT applications across the life span. This proposal describes a career development plan and research strategy in which the PI will gain new and complementary skills, knowledge, and experience to become a leader in developing and evaluating Health IT applications to be patient-centered and patient-driven to improve disease-specific knowledge in SCD. The specific aims are to: (1) adapt iManage, an mHealth app with guidelines, for adults with SCD; and (2) evaluate the adoption, usage, and usability of iManage, and (3) determine the improvement in disease-specific knowledge in adults with SCD. Ultimately, the newly acquired skills developed in this mentored award will be applied to the continuous process of ensuring that updated evidence-based strategies for SCD management will be patient-driven, patient-centered, and accessible via current and future technologies for adults with SCD.