researchmatters.bsky.social
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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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researchmatters.bsky.social
Fun fact?? The US will spend $13Bn on all things #Halloween this year🧙🏻‍♀️🍬👻🎃🧟‍♀️. Yay for play, fun & escapism. And yet. This $$ eclipses CDC's entire FY25 budget. To this end, I appreciate unwavering advocacy by @researchamerica.bsky.social
@altcdc.altgov.info
www.researchamerica.org/research-eco...
Research Takes Cents - Research!America
Research Takes Cents Research!America’s signature Research Takes Cents compares selected consumer spending to the costs associated with conducting research. Research Takes Cents examples are easy to d...
www.researchamerica.org
November 1, 2025 at 1:00 AM
researchmatters.bsky.social
@nam.edu recently presented 10 Shared Commitments to serve as a trust framework for health & health care. Dive deeper into those commitments and a new initiative advancing the #learninghealthsystem on November 17. #NationalAcademyofMedicine

Register for the webinar at www.nam.edu/event/explor....
Exploring the Shared Commitments for a Learning Health System - NAM
This webinar will explore the Shared Commitments for a Learning Health System (LHS) as a common ground framework for collective action to improve health and
www.nam.edu
October 24, 2025 at 9:19 PM
researchmatters.bsky.social
Depressing AF.

NIH is shrinking the number of research projects it funds due to a new Trump policy www.statnews.com/2025/07/29/n... via @statnews.com
NIH is shrinking the number of research projects it funds due to a new Trump policy
NIH plans to shrink the share of grant applications it will award for the remainder of the fiscal year, in some cases by more than half.
www.statnews.com
July 29, 2025 at 5:08 PM
researchmatters.bsky.social
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
June 26, 2025 at 3:26 PM
researchmatters.bsky.social
Join the National Academy of Medicine, part of @nationalacademies.org for a webinar diving deeper into the Learning Health System and 10 Shared Commitments for unifying expectations among the health sector. #learninghealthsystem #healthtransformation

Learn more: www.nam.edu/event/explor....
Webinar: Exploring the Shared Commitments of the Learning Health System - NAM
This webinar will explore the Shared Commitments of the Learning Health System (LHS) as a common ground framework for collective action to advance the LHS
www.nam.edu
June 12, 2025 at 6:11 PM
researchmatters.bsky.social
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
June 8, 2025 at 12:10 PM
researchmatters.bsky.social
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
June 4, 2025 at 12:01 AM
researchmatters.bsky.social
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
June 2, 2025 at 8:16 PM
Reposted by researchmatters.bsky.social
smcgrath.phd
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
May 20, 2025 at 9:06 PM
Reposted by researchmatters.bsky.social
davidarmstrongx.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
May 8, 2025 at 1:51 PM
researchmatters.bsky.social
Well, dumpster fires gonna dumpster fire. But I was so glad to learn about Owl Cam 🎥 today! @statnews.com #karenpennar

www.wildflower.org/visit/athena...
Athena the Owl - Lady Bird Johnson Wildflower Center
See Athena the Owl at the Wildflower Center as she raises her family of owlets through mid-April. She's been coming here for years. See her today!
www.wildflower.org
May 2, 2025 at 9:48 PM
Reposted by researchmatters.bsky.social
academyhealth.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
April 29, 2025 at 5:51 PM
Reposted by researchmatters.bsky.social
kennylinafp.bsky.social
AHRQ in Your Community: How National Investments Improve Local Health Care academyhealth.org/blog/2025-04... via @academyhealth.bsky.social
AHRQ in Your Community: How National Investments Improve Local Health Care | AcademyHealth
academyhealth.org
April 14, 2025 at 11:38 PM
Reposted by researchmatters.bsky.social
academyhealth.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
April 11, 2025 at 6:00 PM
researchmatters.bsky.social
🤬Federal advisory panel on ethical, legal issues in human health research disbanded www.statnews.com/2025/04/03/h... via @statnews.com
Federal advisory panel on ethical, legal issues in human health research disbanded
A committee of experts that advises HHS on emerging ethical and legal issues in human health research has been disbanded, according to an email obtained by STAT.
www.statnews.com
April 4, 2025 at 10:28 PM
researchmatters.bsky.social
Peter Marks, FDA’s top vaccine regulator, forced out www.statnews.com/2025/03/28/f... via @statnews.com

Just need to say that Peter Marks is the steely-eyed missile man if the @fda.gov … this is an incomparable loss.
Peter Marks, FDA’s top vaccine regulator, forced out
Top FDA official Peter Marks was forced to resign as the director of the Center for Biologics Evaluation and Research.
www.statnews.com
March 29, 2025 at 3:54 AM
researchmatters.bsky.social
When creative writing meets the health "system," beauty and truth collide.
poets.org/poem/insuran...

#poetry #healthcare @katiecondon.bsky.social
The Insurance Representative Tells Me How Much the Baby’s Delivery Will Cost
It all depends on the child’s arrival.  If it arrives in what we call The Dawning  Hours, you’ll have to ring the bell
poets.org
March 20, 2025 at 5:38 PM
Reposted by researchmatters.bsky.social
markhamillofficial.bsky.social
I remember it being unpleasant & a lot less fudge-y.
March 18, 2025 at 6:02 PM
Reposted by researchmatters.bsky.social
tingtingzhang.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.
MASCC25
March 18, 2025 at 7:36 PM
researchmatters.bsky.social
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
March 12, 2025 at 12:12 AM
researchmatters.bsky.social
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
March 11, 2025 at 10:02 PM
researchmatters.bsky.social
@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.

cdn.bfldr.com/KOIHB2Q3/as/...
cdn.bfldr.com
February 24, 2025 at 12:04 AM
researchmatters.bsky.social
"We do the research we do so that more people can live long, healthy lives, and live them as they wish to live them."

@kbibbinsdomingo.bsky.social #SandroGalea

jamanetwork.com/journals/jam...
The Value of Academic Health Research
In the past month, the academic health research community in the US has been rocked by the new administration’s efforts to curtail health research expenditures. In the form of “Supplemental Guidance t...
jamanetwork.com
February 23, 2025 at 11:57 PM
Reposted by researchmatters.bsky.social
robcaliff.bsky.social
I am grieving for the many talented & dedicated FDA employees who have been mistreated & those left to do the work of protecting public health. Also for those who will be harmed by this among patients and the public. Those who are complicit in their silence will be judged harshly by history.
February 17, 2025 at 3:34 AM
researchmatters.bsky.social
Just gonna leave this right here
American chaos: standing up for health and medicine - The Lancet www.thelancet.com/journals/lan...
February 14, 2025 at 5:26 PM