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researchmatters.bsky.social

@researchmatters.bsky.social

Researcher | Patient | Advocate | Advisor | Board Member | Consultant Committed to improving cancer care, and healthcare in general Ask me about the learning health system

469 Followers  |  260 Following  |  29 Posts  |  Joined: 31.01.2024  |  1.7491

Latest posts by researchmatters.bsky.social on Bluesky

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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...

Fun fact?? The US will spend $13Bn on all things #Halloween this yearπŸ§™πŸ»β€β™€οΈπŸ¬πŸ‘»πŸŽƒπŸ§Ÿβ€β™€οΈ. 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...

01.11.2025 01:00 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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

@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....

24.10.2025 21:19 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

The FOMOpalooza is real. This sounds like an excellent conversation based on your real-time readout! #hdpalooza

05.09.2025 19:01 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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.

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

29.07.2025 17:08 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

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

26.06.2025 15:26 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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Webinar: Exploring the Shared Commitments of the Learning Health System - NAM This webinar will explore the Shared Commitments of the Learning Health System (LHS)Β as a common ground framework for collective action to advance the LHS

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....

12.06.2025 18:11 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

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!β˜•οΈ

#ARM2025 #ARM25

08.06.2025 12:10 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

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 β€” like colorectal, pancreatic, liver tumors and uterine cancer β€” get very little funding.” @ascocancer.bsky.social #SuneelKamath #ASCO25

04.06.2025 00:01 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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.

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

02.06.2025 20:16 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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.
πŸ©ΊπŸ’» #CIC25

20.05.2025 21:06 β€” πŸ‘ 4    πŸ” 4    πŸ’¬ 0    πŸ“Œ 0
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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 ...

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...

08.05.2025 13:51 β€” πŸ‘ 1612    πŸ” 686    πŸ’¬ 80    πŸ“Œ 55
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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!

Well, dumpster fires gonna dumpster fire. But I was so glad to learn about Owl Cam πŸŽ₯ today! @statnews.com #karenpennar

www.wildflower.org/visit/athena...

02.05.2025 21:48 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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…

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:

29.04.2025 17:51 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
AHRQ in Your Community: How National Investments Improve Local Health Care | AcademyHealth

AHRQ in Your Community: How National Investments Improve Local Health Care academyhealth.org/blog/2025-04... via @academyhealth.bsky.social

14.04.2025 23:38 β€” πŸ‘ 2    πŸ” 4    πŸ’¬ 0    πŸ“Œ 0
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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…

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:

11.04.2025 18:00 β€” πŸ‘ 3    πŸ” 3    πŸ’¬ 0    πŸ“Œ 0
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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.

🀬Federal advisory panel on ethical, legal issues in human health research disbanded www.statnews.com/2025/04/03/h... via @statnews.com

04.04.2025 22:28 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Exactly.

02.04.2025 23:31 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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.

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.

29.03.2025 03:54 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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The Insurance Representative Tells Me How Much the Baby’s Delivery Will Cost It all depends on the child’s arrival.Β  If it arrives in what we call The DawningΒ  Hours, you’ll have to ring the bell

When creative writing meets the health "system," beauty and truth collide.
poets.org/poem/insuran...

#poetry #healthcare @katiecondon.bsky.social

20.03.2025 17:38 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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I remember it being unpleasant & a lot less fudge-y.

18.03.2025 18:02 β€” πŸ‘ 55347    πŸ” 3826    πŸ’¬ 1477    πŸ“Œ 250
MASCC25

MASCC25

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.

18.03.2025 19:36 β€” πŸ‘ 15    πŸ” 5    πŸ’¬ 1    πŸ“Œ 1

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

12.03.2025 00:12 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
NCI/AcademyHealth Healthcare Delivery Research Visiting Scholars Program | AcademyHealth

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

11.03.2025 22:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

@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/...

24.02.2025 00:04 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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 β€œSupplemental Guidance t...

"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...

23.02.2025 23:57 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

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.

17.02.2025 03:34 β€” πŸ‘ 95    πŸ” 30    πŸ’¬ 1    πŸ“Œ 4
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Just gonna leave this right here
American chaos: standing up for health and medicine - The Lancet www.thelancet.com/journals/lan...

14.02.2025 17:26 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Come for the tough questions, stay for the onesies

29.01.2025 18:04 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Well, I’m trying not to be all 🀯 given the news about the β€œpause” on all federal grants, but this is bonkers. I am sending my loving energies to my NIH, AHRQ, DOD, FDA, and CDC funded colleagues. We will get through this turmoil, one tumultuous day at a time.

28.01.2025 05:18 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

The #healthcare affordability crisis is going to get worse before it gets better. Yet, discussion of malleable root causes - #healthliteracy, misaligned incentives, underinvestment in #primarycare, corporate greed (there, I said it) - probably won’t surface at #stateofreform

09.01.2025 17:58 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

@researchmatters is following 20 prominent accounts