Your first trial conversation: 12 questions to take along
A checklist for talking to the trial team: potential benefits, risks, alternatives and how participation would fit into your daily life.
You leave the trial conversation able to repeat the medicine's name. But you are still unsure whether joining would mean two clinic visits next week or four. Useful preparation connects the medical explanation with the life that continues alongside the trial.
You do not need to work through these twelve questions like a questionnaire. Start with the ones whose answers could actually change your decision.
Understand the decision in front of you
1. What would joining change about my current treatment? This brings the discussion from a general description of the trial to your own situation. Ask the team to explain your current plan and the possible new one side by side.
2. What would my next treatment step be if I did not join? This gives you a concrete alternative against which to consider the trial.
3. What are we hoping participation will achieve, and how strong is the evidence for that hope? Put your own expectations into words. Relieving symptoms or spending more time at home might matter most to you. Ask whether the trial is investigating that outcome at all.
Find out what remains uncertain
4. Which treatment might I actually receive? If there are several trial groups, ask the team to explain each. With random allocation, you cannot choose your group yourself.
5. Which risks are already known, and where is experience still limited? A clear answer distinguishes existing knowledge from the uncertainties that remain.
6. How would the team decide whether my trial treatment should stop? This helps you understand how benefit and tolerability will be assessed during participation.
Picture an ordinary week
7. What would my calendar look like for the first four weeks? An example schedule is easier to assess than “regular checks”.
8. What would I need to do between visits? Ask the team to show you whether the plan includes medicines at particular times, keeping records or completing questionnaires.
9. Which journeys, expenses and support would I need to arrange? Describe the things that shape your daily life: working hours, caring responsibilities, travel or someone who would need to accompany you. The team can then address these points.
Leave knowing the next step
10. Who can I contact about symptoms, including evenings and weekends? Write down the relevant number and the instructions for urgent situations.
11. How will my ongoing treatment be arranged when participation ends? Clarify who your contact will be at that point, too.
12. Which questions still need answering before I decide, and by when? Ask for documents to read at home and a way to raise further questions. You are also free to say no.
You do not need to memorise a complete account of the trial. You should be able to explain what would change for you, which uncertainties you would accept and what support you would need. Any gaps give you a starting point for the next conversation.
This information is not a substitute for a conversation with your doctor.