ASH 2023:Telehealth and Decision Making for Patients

Dr. Jane Liesveld from the University of Rochester Medical Center stopped by to tell us about some of the exciting projects her facility is working on. Read below to learn about this exciting work or watch the video to hear it from Dr. Liesveld herself. 

Existing Research Landscape

A large majority of the current research landscape in AML is highly focused on new treatments and new approaches to managing disease. This research is incredibly important and helps move us closer to a cure. In her interview, Dr. Liesveld talked to us about another area of research her facility is working on that she believes is needed in this community. Her facility is working on projects focusing on education and empowerment within the patient community, specifically in goal setting and making decisions in a comfortable environment. 

Telehealth Program

Treatment decision making is a big stressor for many patients. Whether you have a few weeks or a few days to make a decision, the pressure and desire to make “the right choice” lays heavy on patients and their family members. With appointment time being so precious and a large amount of information that typically needs to be shared at each appointment, there often isn’t a lot of time available to sit and think or talk with your loved one. 

In the University of Rochester Medical Center’s pilot telehealth program, they are seeking to address this need. With this program, patients are able to work with members of their care team to discuss and set treatment goals from their home where the pressures usually associated with appointment time aren’t affecting their ability to think through their options and share questions and concerns. This telehealth program also gives the patient and their family the space and privacy necessary to talk about some of the more difficult topics, like end of life decision making and planning.

Patient Goal Setting and Prioritization

In another project, older patients in different age populations (60’s, 70’s, and 80’s +) were surveyed about their decisions and the motivations behind them. They found that patients' goals varied decade to decade, moving from the overall goal of a cure, often to a goal centered more around maintaining quality of life. This goal focus and change can give providers and researchers important insights into the patient perspective and can help inform the type of treatment options that are going to best suit the needs of patients. 

Conclusion

Patients' perspectives and goals are crucial pieces of the treatment plan and provide important perspective that can help inform the direction of future research. Dr. Liesveld shares how the University of Rochester Medical Center is using a patient centered approach and focus to make a difference in the treatment of their patients. 

HealthTree CureHub

At HealthTree, we believe that patients are powerful and have an opportunity to contribute to research in an incredibly unique way. HealthTree Cure Hub empowers patients with the knowledge to actively participate in their health journeys while providing researchers with valuable insights from real-world experiences. HealthTree Cure Hub connects patients and researchers to not only accelerate the development of innovative treatments but also lays the foundation for a future where more educated patients and research leads to more effective and personalized cures. Visit HealthTree Cure Hub today to become an active participant in your care and contribute your unique experience to researchers to move closer to a cure. 

For assistance setting up your HealthTree Cure Hub account, reach out to our patient navigation team by phone: 1-800-709-1113 or email: support@healthtree.org