Prostate Cancer Advisory Board Minutes
PCORI Prostate Cancer Advisory Board Meeting
Tuesday, February 16, 2016
Mohamad Allaf, Yates Coley, Wei Guo, Peter Johnson, Tricia Landis, William Lewis, Mufaddal Mamawala, Ken Pienta, Craig Pollack, Archana Radhakrishnan, William Wilson, Scott Zeger, Risha Zuckerman
Welcome and Introductions
Dr. Scott Zeger welcomed everyone to the first board meeting. The participants introduced themselves and shared their role in the project. Dr. Zeger gave an overview of Hopkins inHealth and how, in general, data can help improve outcomes for patients. He then provided an introduction of the project and its goals.
Overview of Prostate Cancer Case Study
Dr. Yates Coley provided general information on what information is collected through active surveillance of prostate cancer and how those measurements can be used to get an idea of what is happening in the prostate. They have data on over 1,300 patients and can compare each patient to this larger general population. The decision-making tool that has been developed can be used multiple times throughout a patient’s care in the program so that they continue to make the best-educated decisions.
Dr. Coley detailed the decision-making tool and how the calculations are done on the backend of this app, which is currently available online (https://rycoley.shinyapps.io/dynamic-prostate-surveillance/). The calculation produces results based on JHU data. The goal is to bring the app to other institutions nationally and add their data so a patient could be situated in their own geographic area’s data. Each population in a geographic area is different from another and the calculation would need to be recalibrated for this.
Dr. Zeger led the group into a discussion on specific questions in order to gain impressions and information from the three patient stakeholders participating in the meeting.
Question 1: This tool estimates the chance that a man’s tumor is aggressive. To what extent should clinicians share information about this chance with patients?
All three patient stakeholders shared that they want to see the data and want to understand how the data led to the results presented. It is also important to them to know how the results fit into the larger overall picture of their health. Specifically, how the results influence the choices the patient needs to make and how those decisions can impact life expectancy. They also shared that the level of confidence one has in a clinician will impact the trust in the accuracy of the probability presented. A patient only has 15 minutes with their doctor and in that time the patient wants to gather all the information and opinions possible. The stakeholders expressed how challenging it is to remember everything the doctor said in these short appointments so to have this information to take home would be very helpful.
Question 2: Would you want your anonymized data to be used to improve calculation of chances for patients at other academic institutions? Would you want anonymized data from patients at other academic institutions to be used to improve calculation of chances for you?
The stakeholders unanimously supported the use of anonymized data to improve calculations.
Dr. Zeger thanked everyone for their participation and shared that their feedback will be incorporated.