Bipartisan legislation introduced by U.S. Rep. Leonard Lance (R-NJ) on Tuesday would create a pilot program to gauge the psychological and emotional distress of patients participating in clinical trials of potentially life-saving drugs and biological products.
Lance and U.S. Rep. Diana DeGette (D-CO) introduced the Patient Experience in Research Act (PERA) to help provide support to patients involved in clinical trials in an effort to boost participation rates that could advance research and lead to better health outcomes.
The non-profit Cancer Support Community (CSC) found that more than half of patients taking part in clinical trials do not have social or emotional support services available to them.
“A difficult diagnosis can take its toll on a patient,” Lance, a member of the House Energy and Commerce Committee, said. “Information about the patient experience, including the challenges that come with a diagnosis, is needed to help improve the clinical trial process. Many patients are counting on the research and the products that are being developed in promising clinical trials.”
The CSC report suggested a disconnect between patient access to medical care and psychological care despite psychological distress screening and support being fundamental elements of comprehensive cancer care.
“I am proud to introduce this bipartisan bill with my colleague Rep. DeGette to help measure additional factors so patients and their caregivers have the best research,” Lance said.
Speaking in support of the bill, Kim Thiboldeaux, the CEO of CSC, said seamlessly collecting information about the patient experience during clinical research would help ensure the sharing of valuable information and early interventions that improve care standards and patient outcomes.