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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 
4 days 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 
13 days 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 
14 days 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 
20 days 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 
4 weeks ago
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 
4 weeks ago
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 
4 weeks ago
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 
4 weeks ago
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 
4 weeks ago
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 
4 weeks ago
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 
4 weeks ago
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.
4 weeks ago
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 
4 weeks ago
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 
4 weeks ago
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 
4 weeks ago
“20 Percent Doctor Included” & Dr. Algorithm: Speculations and Musings of a Technology Optimist | Khosla Ventures
Healthcare has a radical opportunity to reinvent itself.  Healthcare today often results in suboptimal patient outcomes despite doctors doing the best they can within the current system.  
digital-health  Khosla  POV 
6 weeks ago
Decentralized clinical trials – Andrea’s Blog
A framework for “direct-to-patient,” “remote,” “site-less,” and “virtual” clinical research
healthcare  digital-health  trial  decentralized 
6 weeks ago
Google AI Blog: Applying Deep Learning to Metastatic Breast Cancer Detection
A pathologist’s microscopic examination of a tumor in patients is considered the gold standard for cancer diagnosis, and has a profound impact on prognosis and treatment decisions. One important but laborious aspect of the pathologic review involves detecting cancer that has spread (metastasized) from the primary site to nearby lymph nodes. Detection of nodal metastasis is relevant for most cancers, and forms one of the foundations of the widely-used TNM cancer staging.
healthcare  digital-health  breast-cancer  diagnosis  deep-learning  Google 
6 weeks ago
More Evidence That Nutrition Studies Don’t Always Add Up - The New York Times
A Cornell food scientist’s downfall could reveal a bigger problem in nutrition research.
nutrition  counterpoint 
6 weeks ago
The skeptic: What precision medicine revolution?
The benefits of genomic drugs are exaggerated, hurting patients and the practice of medicine, says one high-profile oncologist.
precision-medicine  Vinay-Prasad  counterpoint 
7 weeks ago
Sociogenomics is opening a new door to eugenics
New ways of using your genetic data could bolster scientific racism and encourage discrimination.
genomics  polygenic  GWAS  counterpoint  sociogenomics 
7 weeks ago
A Cancer Patient’s Guide to Clinical Trials — ProPublica
If you’re considering whether to enroll in a trial of an experimental drug, here’s what you need to know.
healthcare  trial  patient 
8 weeks ago
The market trend analysis and prospects of cancer molecular diagnostics kits | Biomaterials Research | Full Text
The molecular diagnostics market can be broadly divided into PCR (rt-PCR, d-PCR), NGS(Next Generation Sequencing), Microarray, FISH(Fluorescent in situ-hybridization) and other categories, based on the diagnostic technique. Also, depending on the disease being diagnosed, the market can also be divided into cancer, infectious diseases, HIV/STDs (herpes, syphilis), and women’s health issues such as breast cancer, cervical cancer, ovarian cancer, HPV(human papillomavirus), and vaginitis.
healthcare  molecular-diagnostic  market-size 
10 weeks ago
What Spotify's DNA-Test Playlist Gets Wrong About Genetic Ancestry - The Atlantic
A Spotify playlist tailored to your DNA is the latest example of brands cashing in on people’s search for identity.
coupling  genetics  DNA  Spotify  counterpoint 
10 weeks ago
Frontiers | The Potential of CAR T Cell Therapy in Pancreatic Cancer | Immunology
This review summarizes the available preclinical data and highlights early phase clinical trials using CAR T cell approaches in pancreatic cancer, a disease state that is gaining attention as a conduit for cell therapy. Future directions in application of CAR T cell therapy are also considered including its ability to be directed against novel epitopes and combined with other therapeutic regimens.
healthcare  cancer  pancreas  CAR-T  immunotherapy 
11 weeks ago
A Run of Contrary Results | In the Pipeline
From the outside, medical progress looks a lot easier than it really is. Well, I realize that’s true of a lot of things, but it’s especially true in progress against disease, and that’s especially especially true (as I’ve said here before) when you’re talking about dietary influences and what can be learned from them. Butter, whole milk, and other dairy products – bad for your cardiovascular health, right? Not according to this new observational study of 136,000 people across 21 countries.
healthcare  nutrition  counterpoint 
11 weeks ago
(38) Pancreatic Cancer: Advances in Science and Clinical Care - YouTube
This AACR Special Conference, to be held September 21-24, 2018, in Boston, will convene world-renowned experts covering the breadth of research on pancreatic cancer, from early detection and genetics to precision medicine and immunotherapy.
healthcare  cancer  pancreas  AACR  state-of-art 
11 weeks ago
21st Century Physician: Triaging the Tsunami of Medical Information
I am occasionally asked for advice on keeping up with the tsunami of medical information while separating facts from spin. Here are my tips.
healthcare  how-to-read 
11 weeks ago
Genetic determinism rides again
And yet, here we are again with Blueprint, by educational psychologist Robert Plomin. Although Plomin frequently uses more civil, progressive language than did his predecessors, the book’s message is vintage genetic determinism: “DNA isn’t all that matters but it matters more than everything else put together”. “Nice parents have nice children because they are all nice genetically.” And it’s not just any nucleic acid that matters; it is human chromosomal DNA. Sorry, microbiologists, epigeneticists, RNA experts, developmental biologists: you’re not part of Plomin’s picture.
healthcare  genetics  determinism  reductionism 
11 weeks ago
How one pharmaceutical company is reinventing the clinical trial - STAT
Clinical trials are as essential today as drug discovery for bringing new drugs to market. But while new tools and technologies have helped advance techniques for new drug discovery, we’ve seen far less innovation in clinical trials. The process continues to be weighed down with regulatory paperwork, medical jargon, and participants’ time-intensive trips to trial sites.
healthcare  clinical-trial  trial  Jansen  Scripps  digital-health 
11 weeks ago
Sloan Kettering’s Cozy Deal With Start-Up Ignites a New Uproar - The New York Times
The company, Paige.AI, is one in a burgeoning field of start-ups that are applying artificial intelligence to health care, yet it has an advantage over many competitors: The company has an exclusive deal to use the cancer center’s vast archive of 25 million patient tissue slides, along with decades of work by its world-renowned pathologists.
healthcare  pathology  Memorial-Sloan-Kettering-Cabcer-Center  cancer  conflict-of-interest 
11 weeks ago
Everyday Sociology Blog: A Sociology of My Death
I’m dying. I don’t mean this figuratively—like I’m dying of thirst or dying to visit Hawaii. I mean it quite literally. I have incurable, stage IV lung cancer.
healthcare  sociology  death 
12 weeks ago
Cancer treatment in the last 6 months of life: when inaction can outperform action. ecancermedicalscience - The open access journal from the European Institute of Oncology and the OCEI
For example, when a patient’s life expectancy is less than 6 months, many oncologists will not embark on any active cancer treatments. However, multiple new anticancer drugs have been approved recently after being tested in end-stage cancer patients and demonstrating median OS in the experimental arm close to 6 months. Such practice, particularly when the treatment is also accompanied by serious toxicities and cost, can undermine a peaceful life-death transition.
cancer  ethics  healthcare  end-of-life 
12 weeks ago
UX Guidelines for Ecommerce Homepages, Category Pages, and Product Listing Pages
Streamline users’ path to products by providing clear, differentiating product information at all levels — from the homepage to product listing pages.
Design  Guidelines  E-commerce  UX 
12 weeks ago
Designing notifications for apps – Muzli - Design Inspiration
Explore different notification models and when to use which
notification  Design 
12 weeks ago
Designing a food delivery app for motorbike drivers — a UX case study
The following case study is part of a design challenge. I am not in any way affiliated to Grab or any other companies/individuals mentioned in this article. The design decisions and assumptions taken in this case study are solely based on publicly available information
app  food-delivery  Design 
12 weeks ago
Amazon’s Antitrust Antagonist Has a Breakthrough Idea - The New York Times
With a single scholarly article, Lina Khan, 29, has reframed decades of monopoly law.
monopoly  digital-economy  Amazon  antitrust  law 
12 weeks ago
TechCrunch - Disrupt SF 2018 | Anne Wojcicki (23andMe) | Facebook
23andMe CEO Anne Wojcicki on the tremendous opportunities that can be unlocked by genetic testing
healthcare  cancer  precision-medicine  23andme  interview  video 
september 2018
(30) Understanding Nutrition and the Role and Benefits of PERT - YouTube
This animation describes pancreatic enzyme replacement therapy (PERT) and it’s role and benefit for patients who have exocrine pancreatic insufficiency (EPI). The animation provides an overview of the role of pancreatic enzymes in food digestion, the different types of PERT medications that are currently available, and provides tips for dosing and timing of PERT. For the majority of patients taking PERT, there is a significant improvement of symptoms, nutritional status, and overall quality of life.
Visit to learn more.
healthcare  cancer  pancreas  nutrition  enzymes 
september 2018
OncoKB: A Precision Oncology Knowledge Base | JCO Precision Oncology
With prospective clinical sequencing of tumors emerging as a mainstay in cancer care, an urgent need exists for a clinical support tool that distills the clinical implications associated with specific mutation events into a standardized and easily interpretable format. To this end, we developed OncoKB, an expert-guided precision oncology knowledge base.
healthcare  cancer  precision-medicine  OncoKB  SMKC 
september 2018
The four ways that ex-internet idealists explain where it all went wrong - MIT Technology Review
21st-century digital evangelists had a lot in common with early Christians and Russian revolutionaries.
digital-culture  Internet  evangelist 
september 2018
Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5) – Ronny Allan – Living with Neuroendocrine Cancer
We eat food, but our digestive system doesn’t absorb food, it absorbs nutrients. Food has to be broken down from things like steak and broccoli into its nutrient pieces: amino acids (from proteins), fatty acids and cholesterol (from fats), and simple sugars (from carbohydrates), as well as vitamins, minerals, and a variety of other plant and animal compounds. Digestive enzymes, primarily produced in the pancreas and small intestine, break down our food into nutrients so that our bodies can absorb them.
healthcare  cancer  pancreas  nutrition  enzymes  Allan  reference 
september 2018
Palliative Care in Metastatic Pancreatic Cancer
Panelists: John L. Marshall, MD, Georgetown University; George Kim, MD, 21st Century Oncology; Kabir Mody, MD, Mayo Clinic Cancer Center; Eileen M. O
Published: Monday, Aug 27, 2018
healthcare  cancer  pancreas  palliative  care 
september 2018
Patient Checklist - Lustgarten Foundation: Pancreatic Cancer Research
As overwhelming as a pancreatic cancer diagnosis is, it is important to act quickly and put a treatment plan into place. Treatment should ideally begin within one month after you receive your diagnosis.
healthcare  cancer  pancreas  checklist  Lustgarten 
september 2018
All study participants have a right to know their own results- STAT
Between the rise in direct-to-consumer products and more transparent medical care, people today have access to myriad types of data about their personal health — and they’ve come to expect it. Yet for participants in most research studies, outdated ethical standards prevent them from learning anything at all about what was found in their blood, urine, or any other tissue they donated for research.
healthcare  trial  data  patient  transparency 
september 2018
Estimation of the Acquisition and Operating Costs for Robotic Surgery | Minimally Invasive Surgery | JAMA | JAMA Network
Despite evidence questioning the clinical benefit,1 the use of the robotic platform for surgical procedures is increasing.2 No benchmark exists for the cost of acquiring and operating robotic systems, and previous cost evaluations have either omitted key expenses1 or utilized billing records that do not itemize costs with sufficient granularity.2
healthcare  surgery  robotics  cost 
september 2018
Dynamic Behavior of Ca 19-9 and Pancreatic Cancer Recurrence: Enough Data to Drive Salvage Therapy? | SpringerLink
Up to 80% of patients undergoing pancreatectomy for pancreatic ductal adenocarcinoma (PDAC) followed by adjuvant therapy will recur within 2 years, with median recurrence-free survival (RFS) of only 1 year.1
healthcare  cancer  pancreas  surgery  CA-19.9  Verona 
september 2018
Design Thinking Is Fundamentally Conservative and Preserves the Status Quo
When it comes to design thinking, the bloom is off the rose. Billed as a set of tools for innovation, design thinking has been enthusiastically and, to some extent, uncritically adopted by firms and universities alike as an approach for the development of innovative solutions to complex problems.  But skepticism about design thinking has now begun to seep out onto the pages of business magazines and educational publications.
Design-Thinking  counterpoint 
september 2018
The paradox of precision medicine | Nature Reviews Clinical Oncology
According to the paradigm of precision medicine, the administration of agents targeting the molecular alteration detected in a particular patient’s tumour reduces uncertainty in the clinical management of that patient. We describe how approaches to precision medicine can lead, paradoxically, to increased levels of uncertainty. We offer recommendations for how physicians can better navigate new uncertainties in precision medicine.
healthcare  cancer  precision-medicine  counterpoint 
september 2018
Opinion | Are We Being Misled About Precision Medicine? - The New York Times
Doctors and hospitals love to talk about the cancer patients they’ve saved, and reporters love to write about them. But deaths still vastly outnumber the rare successes.
healthcare  cancer  precision-medicine  counterpoint 
september 2018
Addressing Financial Barriers to Patient Participation in Clinical Trials: ASCO Policy Statement: Journal of Clinical Oncology: Vol 0, No 0
Research conducted through clinical trials is essential for evaluating new treatment modalities, establishing new standards of cancer care, and ultimately improving and prolonging the lives of patients with cancer. However, participation in trials has been low, and this is attributable to various factors including patient financial barriers.
healthcare  trial  patient  participation  barriers  financial 
september 2018
Inevitability in technology — Benedict Evans
The statesman's task is to hear God's footsteps marching through history and to try and catch on to his coattails as he marches past'
august 2018
New Strategies for Securing Our Private Lives - Lawfare
I recently wrote an essay reflecting on the reality that nearly anyone with a life online is today subject to being hacked and having anything private become public
privacy  zittrain 
august 2018
Need a paper? Get a plug-in
A collection of web-browser plug-ins is making the scholarly literature more discoverable.
Unpaywall  Book  science  plug-in  free 
august 2018
How Unpaywall is transforming open science
Unpaywall has become indispensable to many academics, and tie-ins with established scientific search engines could broaden its reach.
open-source  Book  free-availability  Unpaywall  science 
august 2018
Utilizing Patient-reported Outcomes in Cancer Clinical Trials - CANCER RESEARCH Catalyst
Assessing new anticancer therapeutics in clinical trials is a vital step in evaluating the toxicity and efficacy of treatments before their approval for widespread use. Throughout these trials, many patients encounter a variety of side effects, ranging from physical ailments such as nausea or rash to psychological symptoms such as depression or anxiety. While it is standard practice to record clinician-reported outcomes to characterize safety, there is no current standard requirement for the use of patient-reported outcomes (PROs) in cancer clinical trials.
digital-health  PRO 
august 2018
Identification of performance indicators across a network of clinical cancer programs
Cancer quality indicators have previously been described for a single tumour site or a single treatment modality, or according to distinct data sources. Our objective was to identify cancer quality indicators across all treatment modalities specific to breast, prostate, colorectal, and lung cancer.
healthcare  cancer  kpi  center 
august 2018
WuXi NextCODE: A Contract Genomics Organization
Built over twenty years on the world’s largest collection of human genomes, our platform today powers the biggest and most innovative precision medicine efforts on four continents, including pioneering population-optimized genome tests and wellness products in China.
healthcare  digital-health  Platform  genomics 
august 2018
Providing help and guidance to applicants
Building on that work, our design team reimagined the end-to-end help experience, and established help content design patterns for the entire site. The primary goal: to respectfully and clearly guide people through what can oftentimes be a deeply personal process, one that will determine how they care for themselves and their family.
healthcare  Design  applications 
august 2018
The Future Of Clinical Trials: The Promise Of AI And The Role Of Big Tech
Testing new drugs is a slow, expensive, and manual process. Artificial intelligence has the potential to disrupt every stage of the clinical trials process — from matching eligible patients to studies to monitoring adherence and data collection.
clinical-trial  digital-health  AI 
august 2018
37 Startups building voice applications for healthcare | MobiHealthNews
next frontier in human-technology interfaces, voice-enabled and voice-first technologies are leading the way in many innovative applications across industries. Predictions that 50 percent of searches will be voice-based by 2020 and that 55 percent of US households will have a smart speaker by 2022 have entrepreneurs, developers, product managers, and marketers rushing to figure out how they can capture the upcoming surge of voice-based technology.
digital-health  Startup  voice-enabled 
august 2018
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