Principle 7

Share Qualified, Quantified Data

Resources to support you

Thought Starters

Explaining Biological Processes Explaining Data Explaining Clinical Trials Explaining Health-Related Finances Explaining Risks & Benefits

We believe that when we appropriately share qualified, quantified data, patients will be more informed and confident in engaging with their healthcare provider throughout the treatment journey.

Understanding data is key to 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, 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 as a resource.

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UPL Rules

The UPL Rules provide detailed guidance on how each of the Principles can be applied in 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.

Provide an explanation of why the data (and its visualization) might matter to patients.
Include background information such as where and how the data was collected, or how measurements were calculated.
Provide “healthy” or “normal” ranges for numbers, for easy comparison.
Compare actuals against means, medians, or baselines.
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
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.

When presenting potential side effects, qualify how likely each is.
Try to quantify the benefits and risks of any treatment, using both traditional clinical trial results (or endpoints) and patient-reported outcomes.
Make the details of the data available in a format that is easy for patients to understand.

Rule 11. Represent numbers visually.

Use graphs and charts to show data sets. Choose a representation that is appropriate for the data and message you are communicating.
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.
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.

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UPL Style Guide

The Style Guide offers detailed guidance on how patient and caregiver materials created with UPL should look and feel while also considering accessibility.

Style Guide topic examples related to Share Qualified, Quantified Data:

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.

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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.

What you will find in the downloads:

Thought Starters

In the Thought Starters, you will find our learnings that may help you explain biological processes, data, clinical trials, health-related finances, and risks and benefits.