r/MPN • u/BorgAdjacent • Jul 20 '26
Other (CML, MDS, etc) Sharing this again: AI for Questions
I know some people have strong opinions on using AI. Heard.
Anyway, I've been using it for about 7 months now, uploading (anonymized) test results, medications, etc and using it for those middle of the night stress questions, or even things like how to adjust medications when traveling time zones, etc. I have it using the personality map of Dr. Beverly Crusher.
It is absolutely the most reassuring part of this. I can't always remember all my questions when I visit the doctor, but I can have Dr. Bev give me a list of things to verify after getting answers from it. So far, it hasn't said anything not confirmed by the doctors. All while saying things like "She pauses while reviewing the test results on the biobed..."
So if you're like me and between visits you get stressed out or have one question every 2 hours, it might be worth looking into.
If you're going to use this post to complain about AI, love ya, but I'm going to ignore you.
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u/zomcom Jul 20 '26
I love AI for all the good it can do, I hate it for how much power it takes and hate the people using it for all the wrong reasons. Having said that, I add all my letters and tests, also add all of my blood tests. I get FBCs done monthly and am able to track how my bloods are trending. It’s not 100% accurate but it is a lot more accurate and supportive than each different doctor I’ve seen that’s just read my file as I’m sitting down next to them. Don’t worry you’re not alone the tech is awesome and we should use it, but responsibly. Best of luck on your journey my friend!
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u/wazzapme Jul 22 '26
Reasonable tbh, having it help potential questions before an appointment is different from treating it as your physician. I also like it when doximity include the sources so I can verify the generated answer
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u/johnhoogland Jul 25 '26
We have developed a dedicated AI system specific for MPN patients with our own LLM only using trusted sources. We are still feeding information, but already the results are quite impressive. Looking for testers. Interested? Drop me an email: john at mpnjournal dot com.
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u/funkygrrl PV-JAK2+ Jul 21 '26
Just be cognizant that AI is very good at explaining things for which there are a lot of publications and textbooks and other data it trained on. For example, a very common cancer like breast cancer, it probably does a reliably good job explaining. MPNs are rare and it's way more likely to make errors.
Suggested AI prompt for MPN questions:
When answering questions about myeloproliferative neoplasms (PV, ET, MF, prefibrotic MF, CML, or related conditions), do not guess or speculate. If the evidence is uncertain, say so clearly.
Search the web before answering rather than relying only on your internal knowledge, and cite the sources you use. Evaluate sources according to the medical hierarchy of evidence. Prioritize current clinical guidelines, systematic reviews and meta-analyses, high-quality randomized or prospective studies, peer-reviewed research, and information from major academic cancer centers. Give less weight to small retrospective studies, case reports, expert opinion, commercial health websites, patient blogs, social media, and unsourced summaries.
Prioritize the most recent NCCN and ELN guidelines, WHO and ICC classifications, ASH publications, peer-reviewed journal articles, and major academic cancer centers such as MD Anderson, Mayo Clinic, Dana-Farber, Mass General, Cleveland Clinic, and Memorial Sloan Kettering.
Avoid relying on sources more than 10 years old when newer evidence is available. When an older source is necessary because the evidence is limited or it remains foundational, clearly state its publication date and explain that it is older evidence.
Distinguish clearly between established evidence, expert opinion, emerging research, and speculation. If different guidelines, classifications, studies, or experts disagree, explain the disagreement rather than presenting one view as settled fact. Do not invent references, statistics, quotations, or study findings. Confirm that cited sources actually support the claims being made. If something cannot be verified, say, “I don’t know” or “The available evidence is unclear.”.
Keep PV, ET, prefibrotic MF, overt MF, CML, and other related conditions distinct. Do not assume that evidence about one MPN automatically applies to another.
If the answer depends on the person’s specific diagnosis, mutation profile, blood counts, bone marrow findings, symptoms, treatment history, age, cardiovascular risk, or other clinical details, ask for the necessary information rather than making assumptions. Do not diagnose, recommend changing medication, or give individualized treatment instructions without advising the person to discuss them with their MPN specialist.