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Tutorial: Building a Patient Side-Effect Guide from Scratch

A step-by-step walkthrough of using an AI tool to produce a clear, readable side-effect guide for patients starting a new oncology treatment — with a full example exchange.

This tutorial walks you through building a patient-facing side-effect information guide using an AI tool. It includes a full example of what to type, what the tool produces, and how to refine the result until it is ready to use.

The task: produce a side-effect guide for a patient in his late fifties who is starting immunotherapy for advanced renal cell cancer. He has not had any prior systemic treatment. He is a retired teacher, well-educated, and likely to read carefully whatever you give him.

Step 1: Open the tool and state the task

Go to claude.ai or chat.openai.com and open a fresh conversation. Begin by describing what you need:

Try it yourself
You are helping an oncologist produce a patient information guide 
about treatment side effects. I will describe the treatment and the 
patient profile. You will produce a draft guide in plain English.

Rules:
- Do not include specific drug names or doses
- Do not include clinical decision thresholds (I will add those separately)
- Use short sentences and simple language
- Tone: calm, honest, and not alarming
- Maximum 500 words

Step 2: Give the clinical context

Try it yourself
Treatment type: immunotherapy (checkpoint inhibitor treatment)
Patient profile: man, late fifties, no prior systemic treatment, 
well-educated, likely to read carefully

Side effects to cover:
- Fatigue
- Skin reactions (rash, itching)
- Diarrhoea
- Immune-related reactions that can affect any body system — 
  explain that these are different from typical side effects and 
  why prompt reporting matters
- The importance of telling all treating clinicians (including dentists, 
  other specialists) that they are receiving immunotherapy

Please draft the guide now.

Step 3: Read the first draft

The tool will produce a draft within thirty seconds. Here is an example of what it might return:


About Your Treatment

You are starting a type of treatment called immunotherapy. Unlike chemotherapy, which directly targets cancer cells, immunotherapy works by helping your immune system become more active against the cancer. This difference matters — and it affects the type of side effects you might experience.

Fatigue

Many people feel tired during immunotherapy. This can range from mild to significant. Rest when you need to. Try to stay gently active — even short walks can help with energy levels over time. If fatigue is affecting your daily life, please mention it at your next appointment.

Skin Reactions

Some people develop a rash or itching, most often in the first few weeks. This is usually manageable. Contact the clinical team if the rash is spreading, blistering, or affecting a large area of your skin.

Diarrhoea

Loose stools can occur. Mild, occasional changes are common. If diarrhoea is persistent, frequent, or contains blood, contact the clinical team promptly.

Immune-Related Reactions

Immunotherapy works by activating your immune system. Occasionally, the immune system can become overactive and affect other parts of the body — including the lungs, liver, kidneys, and joints. These reactions can appear at any point during or after treatment, even months later.

This is why it is important to report any new symptom — however unrelated it seems — to your oncology team before seeking other treatment. This includes symptoms such as shortness of breath, significant joint pain, yellowing of the skin, or vision changes.

A Note for Other Healthcare Professionals

Please tell any clinician who treats you — your general practitioner (GP), a dentist, a specialist for another condition — that you are receiving immunotherapy. This matters because some treatments can interact with how your immune system is behaving during this period.

Questions

If you are ever unsure whether a symptom is related to your treatment, contact us. It is always better to check.


Read this draft carefully. Ask yourself:

  • Are all the side effects covered accurately?
  • Is the description of immune-related reactions clear and appropriately urgent without being alarming?
  • Is the note about other clinicians accurate for how your service works?

For this patient — a well-educated retired teacher who will read carefully — the tone is appropriate. For a patient who finds medical information anxiety-provoking, you might ask the tool to soften the immune-related section. For a patient who needs very direct information, it may be close to right.

Step 4: Replace the escalation guidance with your unit's protocols

The draft currently says things like "contact the clinical team promptly" without specifying what "promptly" means. This is correct — the tool correctly omitted clinical thresholds because you told it to. Now you add your unit's specific guidance.

In your clinical system or word processor, paste the draft. Then add your unit's specific escalation advice for:

  • Temperature thresholds for infection risk
  • What level of diarrhoea requires same-day contact versus urgent contact
  • The specific symptoms that require patients to go directly to an emergency department versus calling the helpline
  • Your unit's out-of-hours contact details

These details are yours to add. They are not something a general-purpose AI tool should determine.

Step 5: Ask for a refinement

Suppose you want the immune-related section to be more specific about why early reporting matters — you have found that patients on checkpoint inhibitors often delay reporting symptoms because they do not connect them to their cancer treatment. Ask for a revision:

Try it yourself
The immune-related reactions section is accurate but could be more 
specific about why patients delay reporting — many assume new symptoms 
are unrelated to their cancer treatment. Add a sentence that directly 
addresses this assumption without being alarming.

The tool will revise the section. Read the revision. If it helps, keep it. If the addition makes the section too long, ask the tool to trim it: "The section is now slightly long. Cut it to the same length as before while keeping the new sentence."

Step 6: Check the reading level

Read the draft aloud — slowly. A retired teacher who reads carefully is a forgiving audience. But you may see patients who are not. If you want a simpler version, ask:

Try it yourself
Rewrite this guide at a simpler reading level — as if for someone 
who reads infrequently and finds medical information confusing. 
Keep all the clinical content but use shorter sentences and 
simpler words throughout.

Keep both versions. Use the appropriate one for each patient.

Step 7: Finalise and add local information

Copy the reviewed draft into your document template. Add:

  • Your unit's helpline number and hours
  • The nurse specialist's name and contact
  • Out-of-hours instructions
  • The next appointment date
  • Any additional monitoring the patient needs to know about

Review the completed document one final time. Then save it as a reusable template that you can adapt for similar patients going forward.

What you now have

A clear, readable side-effect guide that took around twenty minutes to produce, review, and finalise. One that accurately reflects your unit's escalation protocols. One that directly addresses the most common reason patients delay reporting immune-related reactions.

The tool provided structure and a first draft of the words. The clinical accuracy, the unit-specific guidance, and the judgement about what this patient specifically needs — those all came from you.

Remember: AI is a helpful assistant, not a clinician. You make the call.

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