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Data4SCD

Healthathon Challenges

Assessing Care and Treatment Options and Improving Sustainable Treatment

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I'm not against a transplant, but at the end of the day, it may not work for everyone. I have friends that it did not work for. So, I just want to be at a hospital and have doctors that care about me and my feelings and are not just trying to push treatments and everything on me if that’s not what I want to do.” -Patient


You have all these specialties and all these specialists and everything for cancer or they want to do this for HIV, but why not sickle cell. Why is there so much discrimination or stigma tied to sickle cell disease? One of the first blood diseases, why?” -Patient


Here they really don't know what to do. So I'd be there and they have to figure out what to do and then they get you medicines that don’t work and admit me to the hospital and then when I'm in the hospital they don’t know how to treat me when I'm in the hospital, so it’s basically real different down here. So that’s why I feel that I really need a hematologist down here.” -Patient


Identifying pathways to care and sustainable treatment is perhaps the biggest challenge facing SCD patients and those who provide their care. Barriers include lack of treatment options, particularly for adults; lack of education and access to information for patients and providers; lack of awareness of clinical research opportunities; lack of specialists in SCD who can develop individualized care plans with patients; no incentives to providers for care coordination and patient education needed to achieve treatment development and compliance; drug-seeking stigma and racial bias in healthcare, which causes mutual distrust in the patient-provider relationship; financial coverage of treatments; lack of social support for vulnerable patients.

Challenges

  • How might we reduce racial and drug-seeking bias in healthcare?
  • How might we increase access to a wider range of treatment options for patients everywhere?
  • How might we increase SCD knowledge in healthcare?
  • How might we make patients and providers aware of and receptive to new treatment options and clinical research opportunities?
  • How might we facilitate financial access to treatments?

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  1. Pushkar Aggarwal aggarwpr@mail.uc.edu
    18 pts
  2. Nicholas Hassebrock
    18 pts
  3. Alex Wilson
    4 pts

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Full Circle, Full Life

Problem: How might we make patients and providers aware of and receptive to new treatment options and clinical research opportunities? Background: Many sickle cell patients are not completely aware of the full affects of the their disease, how sickle cells affect blood clotting and energy, and thus, are hesitant to reach out for help or see the benefit of help. Objective: Educate patients on how sickle-shaped red blood cells affect the body's ability to deal with infection as well as...

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Risk Factors Analysis and Prediction of Mortality in Hospitalized Sickle Cell Disease Patients using Machine Learning and Artificial Intelligence Deep Learning

The objective of this project was to identify risk factors that significantly impact the mortality in hospitalized sickle cell disease (SCD) patients and to develop a model to predict the mortality risk in future patients. The analysis was conducted on the National Hospital Discharge Survey (NHDS) from 1997-2009 in African-American adults 20 years of age or older who had a diagnosis of Sickle Cell Disease. The risk factors analyzed include demographic variables, hospital related data and...

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