Persistence and Success: Survivors of breast cancer endorse the Siebens Health Care Notebook

Years ago, a renowned researcher at Harvard advised us junior clinician-researchers that to complete research on a specific hypothesis/idea, we should plan to spend ten years. Ten years? She was right.

This month, ten years since my research idea was a vague concept, colleagues and I completed a study on the Notebook with 22 women recovering from breast cancer treatment. The group suffered chemotherapy side-effects impacting the ability to think, a complication that interfered with their day-to-day living. They enrolled in a six-week program, with weekly classes, designed to help them learn how to cope better. 

Each woman received a Siebens Health Care Notebook (now called Notebook for Wellbeing & Health Care), a self-care tool for organizing health-related information during the program. The rehabilitation physician program co-leader introduced the Notebook’s purpose: to provide a written framework that could help them better organize their medical care. He encouraged the patients to read through its simple text and, as part of their "homework," to add their own information.

The study findings? All the study participants, 100%, endorsed the Siebens Health Care Notebook as useful in tracking their health information. They said they all would recommend it to others.

Please help spread the word:
(1) If you have breast cancer, consider purchasing a Notebook to help track and coordinate the complex treatment you are navigating. 
(2) If you know someone struggling with breast cancer or any other serious or enduring health condition, offer the Notebook as a gift. Perhaps help that friend or family member start filling in their own information.
(3) If you are a leader in a health care organization, consider piloting the Notebook, as we did in this study, with a group of your own patients and clinicians.

Thank you to all the individuals who helped demonstrate the Notebook’s value:  

(1) study participants who were willing to read and evaluate the Notebook; 
(2) study authors listed below, each one contributing in crucial ways; and
(3) a special thanks to the lead researcher, Arash Asher, MD, who made it happen.

"Perceptions of a health care notebook from female breast cancer survivors with cognitive impairment" by Pamela Moyo, Darrell Walters, Hilary C Siebens, Jamie Myers, Rachel Baynes, Galen Cook-Wiens, Mi-Yeong Jo, and Arash Asher. Journal of Cancer Education, 4 May 2020.