THE UNIVERSITY OF BRITISH COLUMBIA
THE UNIVERSITY OF BRITISH COLUMBIA
The Respiratory Evaluation Sciences Program (RESP) of University of British Columbia’s Faculty of Pharmaceutical Sciences & Division of Respiratory Medicine held a Patient and Care Provider Advisory Committee (PCAC) meeting at the BC Lung Association building located at 2675 Oak Street, Vancouver, BC. The meeting was called to order at 11:30AM by the moderator, Dr. Mohsen Sadatsafavi.
The meeting agenda featured a walkthrough of the Respiratory Research Team Website, demonstration of COPD Risk Clinical Prediction web applications, and a round table discussion between patients, researchers, and stakeholders of the BC Lung Association on the topic of Clinical Prediction applications.
Clinical Prediction Tools are tools that allow patients and doctors to engage in shared decision making on how to manage one’s health
Tools demonstrated in the meeting:
Lung Function Predictor for COPD Patients: http://resp.core.ubc.ca/ipress/FEV1Pred
Lung Function Predictor for the General Population: http://resp.core.ubc.ca/ipress/FraminghamFEV1
Tools may be used by patients, or by physicians in the presence of the patient, by inputting the patient’s data into the tool to receive useful information to make clinical decisions (e.g. The effect of smoking versus quitting smoking on lung function and COPD severity in the next 10 years)
Problem: the apps were developed without patient input; thus, we do not know how useful or user friendly they are to patients (e.g. not every person understands what terms such as ‘dyspnea on exertion’ means)
Clinical Prediction Tools will not have an impact on patient health without feedback from patients on topics such as how the questions are asked or if the questions are relevant
What is the benefit of involvement in this activity?
Feedback from patients and care providers will directly affect the output of this research project
There is value and a goodwill factor to want to help other patients
Understanding the use of the clinical prediction tool
Prediction tools can help the patient understand what the doctor is talking about
Prediction tools will help physicians guide patient interactions on how to manage their disease (e.g. how lifestyle can impact their disease), and explain what the significance of their test results/lifestyle changes are
How to account for the small minority of individuals who will not provide the accurate information that is needed for accurate predictions?
Tool/doctor should include a disclaimer regarding the liability/information collection/confidentiality of inputting information onto the apps
Tools do not collect patient information (no personal information is saved on the servers)
Disclaimer on the tools will be provided
Where are the tools being used?
Routinely used by doctors in conversations with patients to guide the clinical encounter
Once you have your own spirometry values, you, as the patient, can use the app at home and play around with the values to figure out how you can improve your health
What is the end-goal of the tool?
Patients (alone, or with their physician) will use this app to guide their health decision making
Every time their medications are changed, etc., patients can better understand the risks and consequences of the changes
Patients are empowered to have input on the changes to their treatment in order to control their disease
There is an emotional piece that patients face when reading the objective health data
‘lower risk’ may mean ‘no risk’ to patients
Results must make sense to the patient
Clinicians need to explain and talk to patient in an emotionally sensitive manner
Some patients do not want to know their results
Requires cultural sensitivity
Visuals are important
Gives patients a sense of reality, and an idea of how to improve their health
Terms should include a patient friendly explanation
Tool should include practical questions which can be obtained without seeing a doctor (e.g. diet, exercise, anxiety control)
