Apply the UPL
Quantified Data
Understanding data is an important ingredient of shared decision-making. We should present data in context, so patients can understand the benefits and the risks of... Read More
Understanding data is an important ingredient of shared decision-making. We should present data in context, so patients can understand the benefits and the risks of treatment in both absolute and relative terms. We should strive to provide patients with complete, relevant, unbiased data that has been presented in a way that facilitates their understanding. Although not every patient will want to engage with the details of data, it is important to provide it in case it is needed.
We believe that when we appropriately share qualified, quantified data, patients will be more informed and confident in engaging with their healthcare provider throughout their treatment journey.
Tool: UPL Rules
The UPL Rules provide detailed guidance on how each of the Principles can be applied in practice. We think the UPL Rules are the best way to get a good understanding of how to put the UPL into practice.
Below is a sample of rules pertaining to Share Qualified, Quantified Data:
Rule 9. Provide appropriate context and comparisons along with the data to make it meaningful and useful for patients.
- a. Provide an explanation of why the data (and its visualization) might matter to patients.
- b. Include background information such as where and how the data was collected, or how measurements were calculated.
- c. Provide “healthy” or “normal” ranges for numbers, for easy comparison.
- d. Compare actuals against means, medians, or baselines.
- e. When providing percentages, also provide the raw numbers that were used to calculate the percentage.
- e.g., 50% of patients (124/248) experienced side effect X
- f. Present data in a way that makes it easy for patients to make head-to head comparisons.
Rule 10. If quantifiable data is available, it should always be made available to patients with appropriate context.
- a. When presenting potential side effects, qualify how likely each is.
- b. Try to quantify the benefits and risks of any treatment, using both traditional clinical trial results (or endpoints) and patient-reported outcomes.
- c. Make the details of the data available in a format that is easy for patients to understand.
Rule 11. Represent numbers visually.
- a. Use graphs and charts to show data sets. Choose a representation that is appropriate for the data and message you are communicating.
- b. Avoid 3D charts. The perspective distorts how data is read. Things displayed in front are perceived as larger and more important than what is shown in the background.
- c. When displaying similar types of data, use a consistent visualization method to allow for easy comparison.
For more guidance on visualizing data, see the UPL Style Guide.
Download the complete set of UPL Rules:
Ready But Limited
This tool still has areas for improvement, and more resources will be added over time.
Tool: UPL Style Guide
The Style Guide offers detailed guidance on how patient materials created with UPL should look and feel. It provides specific guidance on how to share qualified, quantified data.
Style Guide topic examples related to Share Qualified, Quantified Data include:
Data
Data brings depth and credibility to medical information, but it is difficult to temper. Too much data can be overwhelming and immobilizing. Too little data can seem condescending or superficial.
In this section you will find guidance on making data approachable and intuitive, so that patients are able to work with their physicians to use complete, relevant data to inform their treatment decisions.
Sample
Download the complete
UPL Style Guide:
Primed & Polished
This tool has been validated extensively, and significant changes will be infrequent.
Tool: Thought Starters
The Thought Starters outline key challenges and learnings collected from dozens of interactions with patients, caregivers, healthcare providers, and other experts. They are a good starting point if you want to explain a specific complex topic to patients.
Explaining Data
Below is a sample Thought Starter related to Share Qualified, Quantified Data.
Sample
Download Thought Starter for Explaining Data:
A Starting Point
This tool contains some early work and may change significantly.
Case Study Highlight
This is an example of how the Share Qualified, Quantified Data principle has been applied to Bristol Myers Squibb (BMS) patient communications.
Helping Patients Understand Clinical Trial Results
This case study illustrates how to visualize complex context relating to clinical trials through images that are familiar to patients. Visualizations of the study design are used to help patients understand how study results are taken and measured, and learn the terminology they might hear from their healthcare team.
Check out the whole project:
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