Attention Oncology Leaders and Patient Communities: New Patient-Reported Outcome (PRO) Instrument Development Initiative for Oncology
November 27, 2023
QualityMetric, an IQVIA business (QM), has contracted with LunaPBC to build a patient-driven oncology instrument for measuring the impacts on physical functioning across many cancers. Cancer group leaders are encouraged to join in this effort to ensure the voice of their community is incorporated. Partnering groups will have access to…
Patients – The True First Authors of Disease
October 30, 2023
What does it take to get attention and establish credibility as a patient community with a complex, understudied disease? For the Arachnoiditis & Chronic Meningitis Collaborative Research Network (ACMCRN), it was a scientific abstract describing information they gathered from their community of patients about living with Arachnoiditis, a debilitating condition that…
Bringing Responsible Use of AI to Patient Advocacy Groups
October 30, 2023
Hardly a day goes by that AI isn’t mentioned in a news report or conversation on how technology is affecting our lives. This is also true for discussions about healthcare advancements, from cancer therapies and precision medicine, to simply being able to serve patients better in the limited time doctors…
Breaking the Mental Model: Individual Data Control Can Deliver Better Research
August 23, 2023
The majority of individuals on Luna want to accelerate research and ensure their data is used as they allow. We considered a recent article in Forbes, and we broke down two recent legal opinion articles on medical data privacy and rights when it comes to your data’s application in research…
The Struggles of Our Superheroes Reveal Their Real Strength: Dr. Catalina Lopez-Correa
August 9, 2023
Seeing our superheroes struggle can be difficult. It’s a view behind the ironworks and cladding. It’s intimate. And frightening. After all, if they too stumble and fall, what fate befalls the rest of us? But seeing that struggle is something else as well: It’s revealing. And it’s there, beneath the…
De-identified, Pseudonymized, Anonymous Data, Oh My!
July 20, 2023
It seems like everywhere we turn these days some aspect of data privacy is in the news with this or that company sharing your data in some form or fashion. Amongst many of these reports are the use of your de-identified data. What is de-identified data and how is it…