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Boosting Patient Input and Involvement in Clinical Trials

As one Roundtable participant noted, “even while patients have a seat at the table, they do not often have access to the grocery store.” SCD patients are often poorly represented in clinical trials and as a result, struggle to understand the key results from emerging research or express concerns to researchers evaluating new treatments.  One potential solution would be to develop better industry, academic, and patient advocacy partnerships to ensure that patients have a seat at the table...

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Promoting Knowledge Around SCD-Friendly Emergency Departments

The lack of specialists in Sickle Cell Disease and poor access to treatment resources creates challenges for patients who may not have people to advocate for them or individualized care plans that they can easily present to ED physicians. Many patients have to drive to select emergency departments for specialized care, which can often be daunting if that emergency department is far away.  While long-term goals, like increasing the number of infusion centers and developing day hospitals,...

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Addressing Inconsistent Protocols for ED Physicians and Nurses

Hospital emergency departments have varying intake protocols for SCD patients, and some have no protocols at all, which creates confusion and challenges for patients seeking care. The Assistant Secretary for Health has released guidelines for the emergency treatment of Sickle Cell Disease but these are not often followed. As a result, many ED doctors and nurses are not trained in administering the proper medications or correctly diagnosing a patient’s symptoms. These issues can be compounded...

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Paul Kuhne

Washington DC, United States

Joined this community on Jun 18, 2020

Bio Roundtables Program Manager for the Center for Open Data Enterprise. Helping convene data leaders in federal government, the private sector, civil society, and academia.

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