Alicia C. Staley (@stales) header
Alicia C. Staley (@stales) profile picture

Co-founder of #BCSM, POWER TWEETER, eternal optimist, 4x #cancersurvivor #PatientDriven - Chief Patient Officer @Medidata

Boston, MA
Joined March 2008
Photo by Alicia C. Staley (@stales)Photo by Alicia C. Staley (@stales)Photo by Alicia C. Staley (@stales)Photo by Alicia C. Staley (@stales)Photo by Alicia C. Staley (@stales)Photo by Alicia C. Staley (@stales)Photo by Alicia C. Staley (@stales)Photo by Alicia C. Staley (@stales)Photo by Alicia C. Staley (@stales)
And... for my 100K tweet - THANK YOU TO THE #BCSM CREW for everything. Seriously. Everything! XOXO
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As a two-time breast cancer survivor, our Chief Patient Officer @stales knows firsthand how profoundly a diagnosis and its treatment can change a life. That experience has reinforced her perspective on clinical research: patient voices should do more than inform. They should influence decisions. This Breast Cancer Awareness Month, she’s highlighting how actively incorporating patients' feedback builds kinder, more efficient studies that deliver better results. Her new article with @ACROhealth outlines the way that would work in practice starting from day one. Read Alicia’s article here: mdso.io/p9i #BreastCancerAwarenessMonth #Medidata
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Alicia C. Staley retweeted
Can the 60k people being given the boot from Microsoft all get together and form a new company that builds a version of Windows and Office that doesn’t have AI, doesn’t use Sharepoint or OneDrive and doesn’t suck?
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Alicia C. Staley retweeted
What. She. Said. 👇🏻
How many more yrs will we hear #ctDNA’s “Not Ready for Prime Time”? The technology exists, oncologists are ordering tests/pts are getting results w/o clear evidence to guide tx decisions. We need research establishing #ClinicalUtility & ⬆️ patient outcomes. Let’s move this forward! #bcsm
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Alicia C. Staley retweeted
This happened because a radiologist is working their ass off to get cancer scans read at 11 pm on a Friday before the weekend and it is Federal law that results are immediately available to the patient in the electronic record
Healthcare is the only industry that drops your cancer scan results into an app at 11 PM on a Friday, then closes for the weekend. No call. No context. Just a PDF full of words like "suspicious" and "cannot be excluded" and a little banner that says "Sleep well!" Meanwhile billing found me in 4 hours 😐
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Alicia C. Staley retweeted
When I was 13, I lost my mom to breast cancer. I still wonder if it could have been prevented. When she found the lump, she did everything right. She went to her primary care doctor, and he told her it was nothing. My mom wasn’t convinced, so she went to a women’s health specialist for a second opinion and was told the same thing. A year passed before she saw a third doctor who was shocked that nothing had been done and ordered tests the same day. By the time she was diagnosed, the cancer had already spread. For the next three years, she went through chemo, surgery, and radiation. Specialist after specialist, asking the same questions again and again. After she passed away, there were two thoughts I couldn’t out of my head: (1) Somewhere, a doctor must have seen a case like my mom’s and caught it early. (2) Nothing that doctor learned had any way to reach her. Healthcare runs in my family. All four of my sisters are nurses or pharmacists, and my fiancée spent the pandemic working in a multi-organ transplant recovery ward. I’ve seen how hard clinicians work, and how much of that work requires understanding the patient and recognizing patterns from past cases. That’s why a doctor can practice for 30 years and get better every year, while a hospital can treat millions of patients without getting much better at treating the next one. What’s missing in healthcare is the infrastructure for it to learn from its own experience. If we don’t examine the cause and outcome of every interaction, how do we get better at knowing which signs to watch for? I spent years at Google and Upwork building AI from human expertise, then eventually left big tech to work on the one problem I couldn’t stop thinking about. I started a company called Concurrence (@concurrencehq) and raised $24M to build data and AI systems that enable healthcare orgs to learn from every patient they treat. Nothing learned is lost, and it reaches the next patient who needs it. We’ve already supported care for over 10 million patients worldwide. My mom deserved a doctor who had seen her case a thousand times. Every patient does.
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Alicia C. Staley retweeted
Not sure how to integrate this anbenitumab plus HB1801 in our current Her2+ landscape since we now have T’DxD there. #ESMO26
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Alicia C. Staley retweeted
Bookmark this and send it to your loved ones outside of tech. This is the best simple guide to help protect them from cyberattacks, written for the average American. Some of us are seeing these threats firsthand, but most people have no idea what's happening. If we stay informed and vigilant, we can navigate this new era of cyberattacks together.
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Alicia C. Staley retweeted
“Chemo brain” is one of the most common things my patients ask me about. We still have no proven drug to treat it. In our small phase II trial, breast cancer survivors with cognitive complaints took oxaloacetate for 8 weeks. Every participant who completed the study reported improvement in cognition, along with less fatigue and better physical function. It’s an early signal, not an answer. A randomized, placebo-controlled trial is the next step. Led by Dr. Patti Ganz, with thanks to @BCRFcure. Out now in @JCOOA_ASCO. doi.org/10.1200/OA-26-00063 #bcsm
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Patient reported outcomes matter - and we need them to be easy for everyone to use
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Alicia C. Staley retweeted
Patients with estrogen-receptor-positive (ER+) HER-2-negative advanced breast cancer experienced significantly improved progression-free survival when treated with an oral combination regimen that included giredestrant, a novel, next-generation selective ER degrader and full antagonist, compared to a standard combination approach. Recently published in @NEJM, these findings come from the phase 3 evERA Breast Cancer study, led by Principal Investigator @elmayermd. Read more: bit.ly/4jGjOYA
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Alicia C. Staley retweeted
Abigail (@AMJohnston1315) has a remarkable gift for bringing people together & nurturing meaningful connections, even while navigating so much herself. Our #MBC community is stronger & my life is richer because of her friendship. 🩷💙💚 #bcsm #MetastaticBreastCancer #Community
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Alicia C. Staley retweeted
Next year (if we can raise enough $ thru sponsors) we hope to be even bigger and better. 90 people registered but MBC is such a 💩 🎢 that what you planned last month or last week may not happen. We have virtual advocacy opportunities available too at metavivor.org.
Day 14 Stage IV Stampede & Summit by the numbers On Oct 6, METAvivor advocates visited 49 Congressional offices to educate policy makers and their staff about MBC. Want to be more involved in advocacy? Visit our advocacy page here: metavivor.org/policy-advocac… #METober
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Alicia C. Staley retweeted
This is the future of oncology. Algorithm/AI-driven biomarker matching to unravel complexity
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Alicia C. Staley retweeted
Rest in power, @HelenBranswell. A true legend in #SciComm + such a kind person. You are irreplaceable, but you leave the work in the best possible hands @statnews. #OncTwitter, for all our progress, we have miles to go before we sleep. 😞Condolences to all who are missing her.
It is hard to believe that Helen Branswell has passed away. Just heartbreaking. On January 4, 2020, Helen wrote STAT's first story on a mystery pneumonia outbreak in China. She saw the pandemic coming well before anyone was paying attention. Helen was a journalist who knew more than most of the experts she interviewed. She understood the science, the history and the politics of every outbreak she covered. She asked the hardest (and best) questions and never let me get away with a vague answer Experts learned from her. I certainly did It's hard to imagine a world of pandemics, biological threats and so much more without a Helen Branswell to explain it all. statnews.com/2026/10/13/hele…
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Alicia C. Staley retweeted
Metastatic breast cancer is an awful diagnosis and I really, really wish I didn’t have it, but the people it has brought into my life, the community we have, well, they make life with MBC more bearable. And I’m grateful for my “cancer muggle” friends who still treat me like Kelly
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Alicia C. Staley retweeted
Tonight we light up in 🩵🩷💚 for metastatic breast cancer and, I hope, raise a lot of 💰 to fund research. I challenge everyone seeing this to donate $13 to @metavivor (tagging @taylorswift13 @taylornation13 because 13 is her favorite number & I’ve been #NotDeadYet for 13 yrs)
TONIGHT! One Night. One Mission. One World United for Metastatic Breast Cancer Research! 💗💚🩵 Join us for #LightUpMBC Live Tuesday, October 13 | 8 PM ET | 7 PM CT | 5 PM PT 📺 Watch FREE and LIVEon the METAvivor YouTube channel,on METAvivor FB Live, or on LiveOne.
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Alicia C. Staley retweeted
How about we celebrate things beyond finishing treatment, like I didn’t throw up today, or the sun is out, or I had a good scan, or I’m #NotDeadYet. And how about we celebrate it with sticky notes, or a chalkboard- anything not loud enough to wake you from a Benadryl induced nap!
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Alicia C. Staley retweeted
This!! With immunotherapy initially things might get bigger and brighter due to immune cell infiltrate. Bone mets, lobular breast cancer, so many things are not “measurable” by current criteria - we MUST modernize - PERCIST, changes in tumor allele fraction, etc.
💬 Viewpoint: Response Evaluation Criteria in Solid Tumors remains useful for standardization, but tumor size alone may not reflect treatment benefit in immunotherapy, precision oncology, and molecular monitoring. ja.ma/4AYXyQ6
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