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A diagnosis of chronic lymphocytic leukemia (CLL) can be incredibly stressful and overwhelming. The medical field is full of jargon and terms that are difficult for the average person to understand under the best of circumstances. Ideally, you and a team of health care professionals will be managing your care, but it can still be hard to understand what the best course of action is for managing CLL. We believe that talking to experts who specialize in the treatment of CLL is a critical part of receiving the best care possible.
Experts who specialize in CLL are often the most knowledgeable about the latest advances in the treatment of CLL and have the most experience treating patients with CLL. Receiving care from an expert improves survival. However, some patients may not have access to a CLL expert because of geography, insurance, or cost. To bridge this gap, we offer our Expert Access™ Program to help connect patients with CLL experts.
The Expert Access™ Program is a telemedicine program for patients diagnosed with CLL who reside in the United States and who are not already seeing an expert physician, (defined as a nationally recognized CLL research physician who primarily cares for CLL patients). Eligible patients fill out a pre-consultation survey and have their medical records summarized and provided to a CLL expert prior to the meeting. Patients participate in a 30-minute online HIPAA-compliant video consult with the CLL expert. Following the consult, patients receive a summary to share with their local health care professional and are asked to complete a survey.
At the annual meeting of the American Society of Hematology (ASH) 2019, Dr. John Pagel interviewed our own Dr. Brian Koffman about his research assessing the impact of our Expert Access™ Program on patients with CLL.
- The Expert Access™ Program allows patients with CLL to get a second opinion from an expert physician who they might not normally have access.
- 95% of patients said that the convenience of the online program was an important factor in their decision to participate.
- After meeting with an expert physician, over 80% of patients had a better understanding of their CLL diagnosis and treatment/management plan. They also felt more confident about their treatment plan and had greater peace of mind.
- 92% of patients learned something new from their expert physician.
- 3 out of 4 patients said that they would make a change in how their CLL is managed
- The summary that is shared with patients’ local health care professionals has also been useful for educating community physicians who don’t normally treat very many patients with CLL.
Thank you to all the patients who have taken part in our Expert Access™ Program and who participated in this research! We could not do this without you. Expert care plays a key role in improving outcomes for patients with CLL. Our results suggest that an online consult with an expert physician can benefit patients by increasing their knowledge of CLL, increasing their confidence in their local health care professional, and motivating them to act.
Please enjoy this brief interview with Dr. Koffman from December 2019 at ASH in Orlando, FL.
Here is your link to Dr. Koffman’s abstract: An Innovative Telemedicine Platform to Provide Expert Access to Patients with Chronic Lymphocytic Leukemia (CLL).
Take care of yourself first.
Ann Liu, PhD