researchmatters.bsky.social
researchmatters.bsky.social
researchmatters.bsky.social
@researchmatters.bsky.social
470 followers 260 following 29 posts
Researcher | Patient | Advocate | Advisor | Board Member | Consultant Committed to improving cancer care, and healthcare in general Ask me about the learning health system
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The FOMOpalooza is real. This sounds like an excellent conversation based on your real-time readout! #hdpalooza
Thrilled to be in the room with the incomparable @coffeemommy.bsky.social for my first @cancercaremascc.bsky.social conference. Important session on partnering with patients to address chronic toxicities in #cancer care #MASCC25
If you’re here @academyhealth.bsky.social come check out my poster describing an approach to assessing progress toward realizing #learninghealthsystems.

And see what I’m like on 4 hours of sleep + 4 cups of coffee!☕️

#ARM2025 #ARM25
Timely study on differences in federal funding by type of cancer, incidence & mortality. "I also was surprised to see how many very common & highly lethal diseases — like colorectal, pancreatic, liver tumors and uterine cancer — get very little funding.” @ascocancer.bsky.social #SuneelKamath #ASCO25
Amazing piece on the power of personal, compassionate connections between MDs & patients. As my @npaforg.bsky.social colleague once averred, we need VALUES-based care as much or more than we need value-based care. Empathy over efficiency!

www.statnews.com/2025/06/02/d... via @statnews.com
Medicine warns doctors not to get too close. I’m glad mine did anyway
Imagine a medical system that embraces doctors’ emotional investment in patients as a strength rather than a liability.
www.statnews.com
Reposted by researchmatters.bsky.social
Setting up to hear panelists @julia-adler-mils.bsky.social @billhersh.bsky.social @prpayne5.bsky.social, and Keith Morse for their session on Preparing an AI Ready Workforce: Policy, Practice, and Future Directions.
🩺💻 #CIC25
Reposted by researchmatters.bsky.social
I have written many healthcare stories, but never before have I written about my own health. I decided to do so after learning one of my drugs costs nearly $1,000 a pill and just 25 cents to make. What I found was an incredible story of discovery and exploitation. www.propublica.org/article/revl...
The Price of Remission
When I was diagnosed with cancer, I set out to understand why a single pill of Revlimid cost the same as a new iPhone. I’ve covered high drug prices as a reporter for years. What I discovered shocked ...
www.propublica.org
Reposted by researchmatters.bsky.social
Read our open data blog series, which highlights its critical role in driving public health and scientific research and explores the threats it faces despite longstanding bipartisan support to make federally-funded data freely available to the public:
Open Data’s Critical Role in Advancing Public Health & Research | AcademyHealth
The first installment of our blog series on open data highlights its critical role in driving public health and scientific research and explores the threats it faces despite longstanding bipartisan…
buff.ly
Reposted by researchmatters.bsky.social
The proposed HHS reorganization and economic turmoil of the past week has significant implications for the field. Our Situation Report offers updates for impacted researchers, including increased scrutiny from Capitol Hill and the impacts of tariffs on the health sector:
AcademyHealth’s Situation Report: Congress Seeks HHS Transparency Amid Reorganization Turmoil | AcademyHealth
This edition of AcademyHealth’s Situation Report examines growing congressional pressure on HHS, escalating concerns over tariffs and health care costs, and new tools for protecting public data…
buff.ly
Reposted by researchmatters.bsky.social
I remember it being unpleasant & a lot less fudge-y.
Reposted by researchmatters.bsky.social
I will co-chair with Prof Maryam Lustberg on June 26th AM
"Workshop 1: Partnering with patients in managing chronic toxicities of cancer and its treatment."
bringing together multidisciplinary professionals, cancer patients, survivors and carers to compare best practices for management toxicities.
Who will be at #SGOMtg? I'm speaking at the Patient Advocate Panel on March 14 about how I've become an accidental advocate (but a committed one!)
#AM25IMPACT
Applications are now open for the @NCICareDelivRes & @AcademyHealth Healthcare Delivery Research Visiting Scholars Program. Collaborate with talented researchers working to address #cancer care challenges. Learn more: ow.ly/xIvZ30mitNL
NCI/AcademyHealth Healthcare Delivery Research Visiting Scholars Program | AcademyHealth
ow.ly
@ascocancer.bsky.social has published this tremendous position statement. Looking back thru my statements (EOBs) from my insurer, I can attest that even with good insurance, removing the added stress of copays & coinsurance for my #cancer treatment would be a godsend.

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