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Every Number Begins in the Room: Following a PHQ-9 Score
Watch the premiere of Episode 4 of Trust by Design
A client sits with the PHQ-9: nine questions about the last two weeks of their life. Each answer is a small number. Added together, they become one: sixteen.
The session ends.
The number does not stop there.
Episode 4 of Trust by Design, “The Life of a Number After It Leaves You,” follows that sixteen from the moment it is written down to places the person who answered may never see.
The episode is a story first, told along an old trail in the Okanagan Valley. It leaves one question to carry into the week:
Where does your data go after you stop watching it?
Watch the premiere
Prefer to listen? Episode 4 is also available wherever you get your podcasts.
Watch or listen, then try one of the three free resources below.
Why follow one PHQ-9 score?
The Patient Health Questionnaire-9 asks how often, over the previous two weeks, a person has been bothered by nine experiences, from little interest or pleasure in doing things to trouble sleeping. Each answer is scored from 0 to 3, and the total runs from 0 to 27. A score of 16 falls in the moderately severe range.
Many therapists use it at intake and again over the course of care, to see whether things are getting better and to notice early when they are not. It is also common in primary care.
For some people, a score on a patient-reported outcome measure such as the PHQ-9 or GAD-7, a prescription and a short note in a primary care record may be the only place their depression or anxiety is ever written down. They may never see a counsellor at all.
That is part of what makes this one number worth following. It is small, routine and widely shared, and it may carry more of a person's life than it appears to.
The promise made at intake travels further than the room
Before a client answers those nine questions, they are usually told something about where their answers will go. That consent is given once, at the start of care, often before anyone can say where a score may eventually travel.
People do not place their trust in the vendors they never see. They place it in the service, and the person, they chose to turn to for help.
Many clinicians trust that the systems they use follow the law, and that the law has them covered. Often, the systems are compliant. But compliance does not necessarily answer another question:
What can these records become once they begin moving across systems, datasets and uses?
Information does travel. In one study of 36 top-ranked depression and smoking cessation apps, 33 sent user data to third parties and 29 sent data to Google or Facebook for advertising, marketing or analytics (Huckvale, Torous and Larsen, 2019).
The episode does not ask therapists to be more careful.
It asks a different question:
Does anyone still know where the water is once it has left the spring?
Three free resources from this episode
The episode comes with three ways to follow the question beyond the story.
1. Where Does My Information Go?
A five-minute prompt you can use right here
Choose a health app or patient portal you already use, or one you are considering. Fill in the blanks below and paste the completed prompt into an AI tool that can read web pages.
One rule: never paste your health information into an AI tool. Only provide the name of the service and its public web pages.
Copy this prompt
I use, or am considering using, __________ [app or patient portal], run by __________ [clinic, health authority or company], to see my health records: test results, prescriptions, notes from my doctors and specialists, and my answers to health questionnaires such as the PHQ-9.
I live in __________ [country].
Read its published privacy policy and any pages about how it stores and transfers personal information: __________ [paste the web addresses, or leave blank and find them].
Using ONLY those pages, answer each question below in a table with four columns: Question | What the pages say (short quote) | Link | Answered? (Yes / Partly / Not stated) If the pages do not answer, write“Not stated”. Do not guess.
Why does it collect my health information?
What was I told about how it is used? Will I be told if that changes?
Who else receives my health information? Is there information in my record that I cannot see? Can that be shared?
What else does it collect about me, such as device, location or use information?
Is my health information used for research or products, shared or sold? In what form? Can it be linked with other data?
Does AI write notes, summarise, flag risk or make predictions? Is my health information used to train AI?
Where is it stored? Can anyone outside my country access it?
Who can see my results and notes? Can I see who has?
How would I be told if my information was exposed?
How long is it kept, including anything made from it? Can I have it deleted?
Who is responsible, and how do I reach them?
Then notice what is missing
Each “Not stated” is a visibility gap: a question about your own information that the published material has not answered.
That does not mean something is wrong. It tells you where visibility ends. The template itself deliberately makes that distinction.
Then ask yourself:
Does what you found change what you choose to share, whether you use the service, or what you want to ask before you do?
2. The Life of a PHQ-9 Score After It Leaves You: a data lifecycle diagram
One page following a single PHQ-9 score through eight stages, from the session to the data lake and back again as a prediction about the next person who answers the same questions.
3. The Clinical Data Governance Checklist
The Clinical Data Governance Checklist (CDGC) takes the same questions further.
It is an open-access checklist designed to help teams examine client information across eleven areas of its lifecycle, including consent, access, retention and information created from existing data.
An unchecked box becomes somewhere to look more closely, with space to decide what happens next and who will take it forward.
The five-minute prompt above is a simplified way into the same eleven areas.
Download the Clinical Data Governance Checklist:
Hansen, C. (2026). Clinical Data Governance Checklist (CDGC): For Structured, Unstructured, and AI- Enabled Clinical Systems. Zenodo. https://doi.org/10.5281/zenodo.19765798
Watch, listen, then follow the number
Watch Trust by Design with Cindy Hansen
Episode 4: “The Life of a Number After It Leaves You.”
Listen and subscribe wherever you get your podcasts:
All episodes, show notes and resources are on the Trust by Design podcast page.
If the episode raises a question for your team, the Clinical Data Governance Checklist is one place to begin the conversation.
If it raises a question about your own information, start with the five-minute prompt above.
Subscribe so you do not miss what comes next, and share this episode with anyone who has ever wondered: “Where does my information go?”
