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IMS 2026 | Understanding the patient perspective in multiple myeloma disease management
Jenny Ahlstrom, HealthTree Foundation, South Jordan, UT, shares insights into key, underrecognized aspects of the patient experience, highlighting the importance of a single, patient-owned health record, as patients often have their data scattered across multiple electronic health record portals. She also emphasizes the value of patient participation in research, not only through clinical trials, but also by sharing clinical data and patient-reported outcomes. This interview took place at the 23rd International Myeloma Society (IMS) Annual Meeting in Glasgow, UK.
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Transcript
I think in healthcare today, what we currently don’t have is a single patient health record that a patient owns and controls, and that is willing to open up and share with the research community. Because a patient is seen, in the United States at least, at multiple academic centers, or multiple centers generally speaking, my data might sit in 10 different EHR portals...
I think in healthcare today, what we currently don’t have is a single patient health record that a patient owns and controls, and that is willing to open up and share with the research community. Because a patient is seen, in the United States at least, at multiple academic centers, or multiple centers generally speaking, my data might sit in 10 different EHR portals. Bringing that data together, I’m the only one that can do that because the centers can’t share the data as they need to for research purposes. So pulling that data together, this is what HealthTree is doing – we’re creating a personal health record for each individual patient and then we can open that up to the research community so this is a way that patients can participate further in research that they have never been able to do before. Yes, patients should join clinical trials, it’s a wonderful way that we can participate in academic research and we should consider clinical trials at every step, but we can do more and we can share our clinical data, we can share our patient-reported outcomes, and you can’t use some of these newer tools like AI without data in a structured way that is in a similar format unless you have that. So that’s why HealthTree is working on putting all that together.
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