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Blinding and Patient-Reported Outcome Completion Rates in US Food and Drug Administration Cancer Trial Submissions, 2007–2017 | JNCI: Journal of the National Cancer Institute | Oxford Academic
Patient-reported outcomes (PROs) are commonly included in submissions to the United States Food and Drug Administration (FDA). Open-label designs are frequent in cancer trials. Between-arm differences in PRO missingness may affect results. We sought to compare PRO completion rates between study arms in randomized open-label and double-blind cancer trials.
PRO  meta-analysis  healthcare 
Mobile app could help reduce cancer-related fatigue. ecancer - News
Untire is developed to reduce the fatigue and to improve quality of life by offering a mobile self-management program.
digital-health  fatigue  apps  QoL 
Is precision medicine really the best approach to improving health? - STAT
wenty years ago, Dr. Francis Collins, who was then director of the National Center for Human Genome Research, made rosy predictions in his Shattuck Lecture about the health benefits sure to flow from the Human Genome Project. His paper on the lecture, “Medical and Societal Consequences of the Human Genome Project,” published in the New England Journal of Medicine, provided an early template for the precision medicine narrative of the past two decades.
healthcare  precision-medicine  counterpoint 
10 days ago
Making New Drugs With a Dose of Artificial Intelligence
The contest, the Critical Assessment of Structure Prediction, was not won by academics. It was won by DeepMind, the artificial intelligence lab owned by Google’s parent company.

“I was surprised and deflated,” said Dr. AlQuraishi, a researcher at Harvard Medical School. “They were way out in front of everyone else.”
neural-network  DeepMind  drug-development  healthcare 
10 days ago
Hard Lessons For Would-Be Healthcare Innovators From UCSF Expert
Keystone meetings are, by design, off the record, in effort to stimulate the free exchange of pre-publication information among participants; however, I’m going to talk about one of the presentations, by UCSF professor Dr. Aenor Sawyer, with her explicit permission.
healthcare  von-hippel  transformation  Innovation 
15 days ago
Real-world studies no substitute for RCTs in establishing efficacy - The Lancet
We live in the real world, so it is reasonable to expect that data collected from the real world should help identify effective therapies. Indeed, rapid increases in the availability of registries, electronic health records, and insurance claims, and the ability to access, process, link, and analyse data from these sources at fairly low cost lend support for calls to replace randomised controlled trials (RCTs) with so-called real-world studies to establish the efficacy of a therapy, 1
healthcare  RWE  RCT 
16 days ago
Pre‐operative nutrition and the elective surgical patient: why, how and what? - Gillis - 2019 - Anaesthesia - Wiley Online Library
Pre‐operative nutrition therapy is increasingly recognised as an essential component of surgical care. The present review has been formatted using Simon Sinek's Golden Circle approach to explain ‘why’ avoiding pre‐operative malnutrition and supporting protein anabolism are important goals for the elective surgical patient, ‘how’ peri‐operative malnutrition develops leading in part to a requirement for pre‐operative anabolic preparation, and ‘what’ can be done to avoid pre‐operative malnutrition and support anabolism for optimal recovery.
healthcare  nutrition  pre-operative 
16 days ago
Carbohydrate quality and human health: a series of systematic reviews and meta-analyses - The Lancet
Previous systematic reviews and meta-analyses explaining the relationship between carbohydrate quality and health have usually examined a single marker and a limited number of clinical outcomes. We aimed to more precisely quantify the predictive potential of several markers, to determine which markers are most useful, and to establish an evidence base for quantitative recommendations for intakes of dietary fibre.
healthcare  nutrition  met-analysis 
16 days ago
The GENERATE Study | GENetic Education, Risk Assessment, and TEsting
Help GENERATE’s world-class pancreatic cancer experts make a difference in cancer care.

GENERATE will begin enrolling in early 2019. Please fill out our contact form, and we’ll be in touch when enrollment starts.
healthcare  cancer  pancreas  screening  GENERATE 
16 days ago
Apple Shows Facebook Who Has the Power in an App Dispute - The New York Times
That’s because those features run on Facebook’s internal, custom-built iPhone apps — and Apple had shut them all down, according to nine current and former employees of the companies, who requested anonymity because they were not authorized to speak publicly.
survelliance-capitalism  Facebook  Apple  onavo 
16 days ago
Meeting Library | The need for improvement in the management of fatigue, depression and pain in pancreatic cancer.
Pancreatic cancer (PC) and its treatment(s) results in symptom and side effect burden and can impact patient’s overall quality of life (QOL).
healthcare  cancer  quality-of-life  QoL 
17 days ago
When is crossover desirable in cancer drug trials and when is it problematic? | Annals of Oncology | Oxford Academic
The use of crossover, as a design feature of randomized trials, is common, with reports indicating that up to 22% of all randomized controlled trials utilize this feature
healthcare  crossover  clinical-trial 
19 days ago
Data Scientist Explains How AI's Seductive Power Can Mislead Biomarker Researchers
An important theme of this column has been that despite what seems like exceptional potential, the impact of data science and digital on drug discovery and development to date has been conspicuously limited.
digital-health  data-science  counterpoint 
21 days ago
McCain is called a warrior. Is that the right metaphor for fighting cancer?
he metaphor was inevitable.

Moments after the news of Sen. John McCain’s brain tumor reached the internet, he was being pinned with the badge of the cancer warrior.
Healthcare  cancer  psychology 
21 days ago
Is the genie out of the bottle? Digital platforms and the future of clinical trials: Economy and Society: Vol 0, No 0
Is it possible to conduct impartial clinical trials in a world full of digital networking tools that patients can use to coordinate themselves and act against research protocols? This paper builds on an ethnography of PatientsLikeMe, a company running an internet social media network where patients with different conditions share their clinical data with standardized questionnaires.
digital-health  patient-engagement  social-network  Patient-Like-Me 
21 days ago
Opinion | How Cancer Changes Hope - The New York Times
Facing death, I felt the connection between the past and the present more deeply than I ever thought I would.
cancer  psychology 
21 days ago
O.K., Google: How Much Money Have I Made for You Today? - The New York Times
Shoshana Zuboff would undoubtedly get the joke, but she probably wouldn’t laugh. In “The Age of Surveillance Capitalism,” she warns against mistaking the soothing voice of a personal digital assistant for “anything other than the exploitation of your needs.” The cliché that “if you’re not paying for it, you’re the product” isn’t alarming enough for her. She likens the big tech platforms to elephant poachers, and our personal data to ivory tusks. “You are not the product,” she says. “You are the abandoned carcass.”
Technology  Social-media  colonialism  feudalism 
21 days ago
Accelerating the Digital Revolution in Healthcare
This is an incredible moment in time for medicine. We’ve reached a tipping point in the convergence of biomedical and digital innovation.
digital-health  Novartis 
22 days ago
Be More Sensitive to the Toxicities of Cancer Therapy | Page 1
It is difficult to overstate the magnitude of the transformation in cancer management over the past several decades. Any short list of the most impactful events during this extended period must include advances in antineoplastic drug delivery.
healthcare  cancer  symptoms  toxicity 
22 days ago
Drug companies paid $116 million to patient advocacy groups in 2015 alone, new data suggests | PBS NewsHour
Pharmaceutical companies gave at least $116 million to patient advocacy groups in a single year, reveals a new database logging 12,000 donations from large publicly traded drugmakers to such organizations.
healthcare  associazioni  COI 
22 days ago
Meeting Library | Outcomes in pancreatic adenocarcinoma (PDA) patients (pts) with genetic alterations in DNA damage repair (DDR) pathways: Results from the Know Your Tumor (KYT) program.
Advanced DDRmut pts have an improved OS when treated with platinums, compared to pDDR pts. But, in the absence of platinum-based therapy, there is no OS difference observed in DDRmut vs. pDDR pts, suggesting that DDR status has no pure prognostic value. These findings support the need to test all pts with advanced PDA, to ensure that DDRmut pts are treated with platinum-based therapy.
healthcare  cancer  pancreas  DNA-repair  genetics  platinum  therapy 
22 days ago
Opinion | Dr. Google Is a Liar - The New York Times
Fake news threatens our democracy. Fake medical news threatens our lives.
healthcare  Google  fake-news 
25 days ago
Pancreatic cancer | Guidance and guidelines | NICE
This quality standard covers diagnosis of pancreatic cancer and management of pancreatic ductal adenocarcinoma in adults aged over 18. This quality standard describes high-quality care in priority areas for improvement. It does not cover national initiatives, such as cancer screening or audit.
healthcare  cancer  pancreas  NICE  multidisciplinary  standard 
25 days ago
VISTA checkpoint implicated in pancreatic cancer immunotherapy resistance | MD Anderson Cancer Center
The University of Texas MD Anderson Cancer Center research team found overexpression of the immune checkpoint VISTA on immune cells, especially macrophages, that infiltrated pancreatic tumors. Their paper will be published online Friday at the Proceedings of the National Academy of Sciences.
healthcare  cancer  pancreas  VISTA  MD-Anderson 
25 days ago
The Race to Diagnose Cancer With a Simple Blood Test
ive years ago, a team of researchers pored over the results of a prenatal genetic test given to more than 125,000 healthy pregnant women and made a stunning discovery. The blood test, marketed by gene-sequencing giant Illumina, was designed to detect chromosome anomalies associated with conditions such as Down syndrome by analyzing fragments of fetal DNA circulating in the mother’s blood.
healthcare  cancer  test 
25 days ago
Single Blood Test Screens for Eight Cancer Types
Johns Hopkins Kimmel Cancer Center researchers developed a single blood test that screens for eight common cancer types and helps identify the location of the cancer.

The test, called CancerSEEK, is a unique noninvasive, multianalyte test that simultaneously evaluates levels of eight cancer proteins and the presence of cancer gene mutations from circulating DNA in the blood. The test is aimed at screening for eight common cancer types that account for more than 60 percent of cancer deaths in the U.S. Five of the cancers covered by the test currently have no screening test.
healthcare  cancer  test  CancerSEEK 
25 days ago
Why We Revolt — The Patient Revolution
Our mission is to arm people to tell stories; stories about their lives, stories about their capabilities and limitations, and stories about what risks, benefits and trade-offs look like from their point of view. We want people to tell these stories in exam rooms and hospital rooms, in their communities and in the rooms where decisions get made.
Book  healthcare  patient 
25 days ago
Fundamentals of Data Visualization
This is an online preview of the book “Fundamentals of Data Visualization” to be published with O’Reilly Media, Inc.
visualization  data 
25 days ago
Fundamentals of Data Visualization
If you are a scientist, an analyst, a consultant, or anybody else who has to prepare technical documents or reports, one of the most important skills you need to have is the ability to make compelling data visualizations, generally in the form of figures.
data-visualization  Reference 
5 weeks ago
Facing Complexity: Wicked Design Problems – Age of Awareness – Medium
In his seminal article ‘Wicked Problems in Design Thinking’, Richard Buchanan emphasized that designers often engage in conceiving and planning “what does not yet exist, and this occurs in the context of indeterminacy of wicked problems” (Buchanan, 1995, p.17). He calls design thinking the “new liberal art of technological culture” (Buchanan, 1995, p.3) and points towards its potential in integrating the knowledge of the natural, social and humanistic sciences into adequate solutions to the wicked problems of design.
Design  wicked-problems  Buchanan 
5 weeks ago
The World's Leading Life Science Accelerator - IndieBio
A huge focus for every team while at IndieBio is going from bench to product in four months. This means making prototypes, getting them into hands of mentors and potential customers, and iterating off of their feedback over and over again
accelerator  life-science  IndieBio 
5 weeks ago
What happened when biotech startup pursued a new treatment for pancreatic cancer. - The Washington Post
Two years ago, as a Harvard undergraduate, I started a biotech company with a fellow student to develop an experimental drug for pancreatic cancer.

As biology majors, we had read a paper by a Harvard Medical School professor about an intriguing experiment and hoped we had found a possible solution to one of the world’s most lethal diseases. Rather than try to kill pancreatic tumors directly, we would block a cellular system called Hippo-YAP, which shields cancer from existing cancer-killing drugs. According to the paper, drugs that had been ineffective successfully destroyed pancreatic tumors in mice after Hippo-YAP was inactivated.
healthcare  cancer  pancreas  drug-development  failure 
5 weeks ago
Glossary of Common Site Terms -
This glossary will help you understand words and phrases frequently used on Many of these words are also used by clinical researchers and others in the same or a similar manner. But the definitions below are provided to explain content on only.
glossary  medical  trial 
5 weeks ago
Commentary: Oncologist speaks out on human toll of high health care costs
A Fred Hutch researcher speaks out on the human cost of the ‘unfettered, unbridled greed’ within our health care system
healthcare  cancer  financial-toxicity  greediness  COI 
5 weeks ago
2018 Year End Funding Report: Is digital health in a bubble? | Rock Health | We're powering the future of healthcare. Rock Health is a seed and early-stage venture fund that supports startups building the next generation of technologies transforming healt
An unprecedented amount of capital is being put to work in digital health startups. Across 2018, investors poured nearly $8.1B into the sector, surpassing 2017’s record-setting total of $5.7B by a whopping 42%. With 368 digital health deals completed in 2018 (only slightly more than the 360 in 2017) the average deal size shot up to $21.9M. Half of all 2018 deals were seed and Series A rounds, suggesting investors continue to believe in new entrants as they double-down on maturing, later-stage companies.
funding  2018  digital-health 
5 weeks ago
Data Scientist Explains How AI's Seductive Power Can Mislead Biomarker Researchers
I’ve been writing quite a bit over the last year about the opportunities and challenges associated with bringing advances in data and digital to bear on the discovery and development of impactful new medicines. I’ve been struck by the potential of many of these powerful approaches, tools, and techniques, but underwhelmed by the drooling that’s often accompanied them.
digital-health  Bigdata  counterpoint  machine-learning 
6 weeks ago
False-positive results released by direct-to-consumer genetic tests highlight the importance of clinical confirmation testing for appropriate patient care | Genetics in Medicine
There is increasing demand from the public for direct-to-consumer (DTC) genetic tests, and the US Food and Drug Administration limits the type of health-related claims DTC tests can market.
counterpoint  healthcare  genetic-testing  false-positive 
6 weeks ago
Commentary: Patients As Partners At San Antonio Breast Cancer Symposium : Shots - Health News : NPR
Another thing that makes the symposium special is the presence of a couple of hundred patient advocates alongside scientists and clinicians. In San Antonio, advocates stand up and ask questions after plenary talks. Patients sit on panels, contribute papers and weigh in on research priorities
healthcare  cancer  patient  advocacy 
7 weeks ago
The cancer stories no one wants to hear - STAT
uring the 11 months when my husband, Ahmad, was dying of bladder cancer, few people wanted to hear how he was truly doing. They wanted to hear about hope, courage, and positivity, not about how Ahmad was unlikely to survive or his ruminations on how to live well while dying.
healthcare  patient  story  war  metastatic  counterpoint  psychology 
7 weeks ago
Press Announcements > FDA approves first cancer drug through new oncology review pilot that enables greater development efficiency
This is the first approval that FDA has granted as a part of two new pilot programs announced earlier this year that collectively aim to make the development and review of cancer drugs more efficient, while improving FDA’s rigorous standard for evaluating efficacy and safety.
new  clinical-trial  approval-process  healthcare 
7 weeks ago
We Are Not A Dashboard: Contesting The Tyranny Of Metrics, Measurement, And Managerialism
The dashboard is the potent symbol of our age. It offers the elegant visualization of data, and is intended to capture and represent the performance of a system, revealing at a glance current status, and pointing out potential emerging concerns.
managerialism  Bigdata  dashboard  reductionism  counterpoint 
7 weeks ago
Surgery unnecessary for many prostate cancer patients. ecancer - News
Otherwise healthy men with advanced prostate cancer may benefit greatly from surgery, but many with this diagnosis have no need for it.
healthcare  surgery  cancer  prostate 
8 weeks ago
Real World Evidence at the FDA | The Incidental Economist
The Food and Drug Administration (FDA) has announced a new strategic framework to advance the use of ‘real-world evidence’ (RWE), using ‘real-world data’ (RWD) to support the development of drugs and biologics. The framework is described in greater detail here. The framework is not (yet) a new set of policies. But it is an important step toward the formulation of policies for the inclusion of observational data and research designs in the FDA’s evaluations. This is entirely welcome.
framework  digital-health  FDA  RWE 
8 weeks ago
Real-World Evidence and Randomized Studies in the Precision Oncology Era: The Right Balance | JCO Precision Oncology
Randomized clinical trials (RCTs) are the gold standard for rational therapeutics in evidence-based medicine.1 Although variable, the cost of conducting an RCT can be as high as $1 billion,1 putting into question their feasibility for every health care intervention. Also, the broader application of RCT outcomes has been subject to scrutiny, considering the inherent selection bias. Less than 5% of adult patients with cancer participate in clinical trials, and those who do are younger, healthier, and less diverse than their real-world counterparts.2 Today, RCTs remain the gold standard despite changing practice patterns; however, because of their limitations, coupled with unmet health care needs, a reassessment of whether this traditional approach should be required for low-risk interventions, particularly in cancer, is warranted.
healthcare  RCT  RWE  PRO 
10 weeks ago
Patient involvement toolkit for researchers | Cancer Research UK
Patient involvement can improve the quality and relevance of your work, helping you better understand and articulate the benefits your research can have for cancer patients. 

This toolkit provides guidance, tips and templates to help you plan, deliver and evaluate your patient involvement. Once you’ve planned how you want to involve patients, we can also help you find them. 
healthcare  patient-engagement  toolkit  UK 
11 weeks ago
Statistical pitfalls of personalized medicine
Misleading terminology and arbitrary divisions stymie drug trials and can give false hope about the potential of tailoring drugs to individuals, warns Stephen Senn
healthcare  precision-medicine  counterpoint 
11 weeks ago
Practice of Change
Over the last century civilization has systematically supported a market- based approach to developing technical, financial, social and legal tools that focus on efficiency, growth and productivity. In this manner we have achieved considerable progress on some of the most pressing humanitarian challenges, such as eradicating infectious diseases and making life easier and more convenient. However, we have often put our tools and methods to use with little regard to their systemic or long-term effects, and have thereby created a set of new, interconnected, and more complex problems. Our new problems require new approaches: new understanding, solution design and intervention. Yet we continue to try to solve these new problems with the same tools that caused them.

Therefore in my dissertation I ask:

 How can we understand and effectively intervene in interconnected complex adaptive systems?
change  framework  change-management 
12 weeks ago
From second to hundredth opinion in medicine: A global consultation platform for physicians | npj Digital Medicine
Serious medical diagnostic errors lead to adverse patient outcomes and increased healthcare costs. The use of virtual online consultation platforms may lead to better-informed physicians and reduce the incidence of diagnostic errors. Our aim was to assess the usage characteristics of an online, physician-to-physician, no-cost, medical consultation platform, Medscape Consult, from November 2015 through October 2017. Physicians creating original content were noted as “presenters” and those following up as “responders”.
Platform  digital-health  patient-experience  patient-portal 
november 2018
Researchers Explore a Cancer Paradox - The New York Times
Healthy cells carry a surprising number of cancer-linked mutations, but they don’t turn into tumors. What’s holding them back?
cancer  Cell  mutations  healthcare  counterpoint  growth 
november 2018
Why do digital health startups keep failing?
The “move fast and break things” approach that works in tech doesn’t translate well to healthcare. Instead, digital health startups should try need-driven innovation.
Startup  digital-health 
november 2018
Editor’s letter: The precision medicine issue
Precision medicine has led to incredibly effective treatments for cancer and inherited disease. But not everyone gets treated.
healthcare  MIT  precision-medicine 
november 2018
A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States
Concerns about genetic privacy affect individuals’ willingness to accept genetic testing in clinical care and to participate in genomics research.
healthcare  privacy  genetics 
november 2018
Why Doctors Hate Their Computers
Digitization promises to make medical care easier and more efficient. But are screens coming between doctors and patients?
healthcare  digital-health  digital-culture  doctor  computer-aversion 
november 2018
Will Real World Performance Replace RCTs As Healthcare's Most Important Standard?
Randomized control trials – RCTs – rose to prominence in the twentieth century as physicians and regulators sought to evaluate rigorously the performance of new medical therapies; by century’s end, RCTs had become, as medical historian Laura Bothwell has noted, “the gold standard of medical knowledge,” occupying the top position of the “methodologic heirarch[y].”
clinical-trial  digital-health  trial 
november 2018
Sloan Kettering Cancer Researchers Correct the Record by… — ProPublica
The hospital’s chief medical officer resigned last month after failing to disclose company ties in medical journals. Now, Memorial Sloan Kettering researchers, including chief executive Dr. Craig B. Thompson, are updating their own conflict-of-interest disclosures.
november 2018
U.S. Cancer Centers Deceptive Testimonials Database | Truth In Advertising conducted a review of patient testimonials used to promote the 50 cancer treatment centers in the U.S. that spent the most money on advertising in 2017. Our results revealed that, of the cancer centers still in business in 2018, 43 out of 48 – or 90% – deceptively used patient testimonials in their marketing materials by promoting anecdotal, atypical patient results without clearly and conspicuously disclosing what the generally expected results for a patient in a similar situation would be.
healthcare  deception  Advertising 
november 2018
This Is How We Radicalized The World
On Sunday, far-right evangelical Jair Bolsonaro was elected president of Brazil. The era of being surprised at this kind of politics is over. Now we have to live with what we've done.
digital-politics  Social-media  politics 
november 2018
Science & Research (Drugs) > FDA’s MyStudies Application (App)
The U.S. Food and Drug Administration (FDA) is posting computer code and a technical roadmap that will allow researchers and developers to customize and use the FDA’s newly created MyStudies app. The FDA MyStudies App is designed to facilitate the input of real world data directly by patients which can be linked to electronic health data supporting traditional clinical trials, pragmatic trials, observational studies and registries
healthcare  digital-health  app  FDA  MyStudies 
november 2018
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