Ned Anderson: The Digital Health Update by Paul Sonnier ⋅ May 4, 2017 ⋅ #273

I will be making this announcement to 55,000+ members of the Digital Health group on LinkedIn. If you’re on LinkedIn, please do join the group, which allows you to opt in to receiving these announcements in addition to connecting with thousands of other global stakeholders in digital health. Note that I will continue to update this announcement up until sending out the final version via LinkedIn. I’m also now using Constant Contact to send an html and image-rich version of my announcements. You can subscribe to that version here.

The Digital Health Update by Paul Sonnier ⋅ May 4, 2017 ⋅ #273

Dear Group,

I’ve published two issues of The Digital Health Newsletter since last week’s group announcement…

The Digital Health Update for April 29, 2017
One of, if not the biggest benefits provided by digital health is when it empowers people to prevent disease before they ever become patients. In a compelling TED Talk making the case for the value of information and behavior change to reduce disease risk, neuroscientist Lisa Genova describes how the way we live each day can greatly reduce our risk of developing Alzheimer’s. I also feature a new World Economic Forum (WEF) project that’s pursuing value-based healthcare pilots around the globe, an article and call for public comment by Bradley Merrill Thompson of the CDS Coalition on draft guidelines for machine learning and clinical decision support software designing, the Million Veteran Program achieves a major genomics milestone, a WIRED video featuring Catalia Health’s Mabu robot companion (plus much more on the topic of AI and robotics in healthcare), will Amazon’s new “Echo Look” machine-learning system herald a new digital health tangent for the company?, and Fitbit says the recent instance of a Flex 2 exploding, catching fire, and burning a Wisconsin woman’s arm was caused by “external forces”, not defects with their wearable device.
Read the newsletter, here.

The Digital Health Update for May 2, 2017
This week: Ken Deutsch argues that the Henrietta Lacks story serves as a powerful lesson that patients deserve full control of their genetic data; Tom Ekman, author of a new book, “Babies of Technology: Assisted Reproduction and the Rights of the Child”, sits down with Salon’s Amanda Marcotte; a new $50M DARPA initiative seeks to zap your vagus nerve to help you quickly learn a foreign language; Robert Plenge, MD, PhD, asks: “Can human genetics also be used to estimate the target dose and a therapeutic window?”; CRISPR gene editing could lead to a vaccine for arthritis; Cherlynn Low sits in on a virtual support group for sexual-assault survivors; Carrie Goldberg’s law firm fights for victims of online harassment, sexual assault, and blackmail; 7,000 Lyme disease patients are conducting their own study; Over one million patients are members of online patient community Inspire; and TV host and comedian Conan O’Brien has sex on the brain when he tries out the new VR game Wilson’s Heart on Oculus Rift.
Read the newsletter, here.

I’ve copied and pasted the text from the newsletter below for better web-search (SEO) and archival purposes.

The Digital Health Update for April 29, 2017

One of, if not the biggest benefits provided by digital health is when it empowers people to prevent disease before they ever become patients. Lisa Genova, a neuroscientist and author of “Still Alice“, a novel about Alzheimer’s disease that was turned into a major motion picture starring Oscar winner Julianne Moore, delivers a compelling TED Talk highlighting how the way we live each day can greatly reduce our risk of developing Alzheimer’s. As readers of my newsletter are well aware, the FDA recently granted permission to 23andMe to market and sell its genetic DNA test for Alzheimer’s risk directly to the public , i.e. no doctor or insurer required. Whether armed with this digital health information or not, consumers can act to reduce their risk of Alzheimer’s disease. Risk-reducing behaviors include good sleep ‘hygiene’, staying physically active, and being a lifelong learner. Note that this all occurs outside of the healthcare system, does not require a pill, and is fostered simply by information, education, and a willingness on the part of consumers to make the changes.

A new global effort led by the World Economic Forum in partnership with Novartis, Takeda, Medtronic, Kaiser Permanente, Qualcomm Life, and many other companies, organizations, and governments is pursuing value-based health care (VBHC) pilots that track and pay for treatment based on how well they work rather than the volume of care. According to information on the WEF’s website, the “Value in Healthcare” project aims to identify the foundations of value-based health care in order to define roadmaps and system-level reform through pilots. From a content perspective, the project will: Establish a taxonomy of value-based healthcare fundamentals, Create a database on best practices based on real-world examples off VBHC, Identify barriers preventing further advancement toward alignment on value and solutions to resolves these challenges, Develop roadmaps for system-level reforms, and Demonstrate proof of concept solutions through pilot programs focused on defined population segments. The first scheduled pilot will take place in Atlanta, GA and focus on heart failure treatment. Other pilots are planned for The Netherlands, Singapore, and China.

Echoing the comments I made in my last newsletter, Harvard Business School Professor Michael Porter eloquently sums up the status quo issues to be addressed by the WEF’s project: “Hospitals, primary care practices, the way people get paid—all of that has to be transformed. The pushback is not on the ideas, it’s on implementation. Something of a political war is underway in healthcare, the AMA (American Medical Association) has been a great supporter of the old system. The private insurance industry, although there are important exceptions, has also been holding this back—they are doing pretty well the way it is. They are making good margins. Medical device and pharmaceutical companies are starting to realize that if they don’t change the nature of healthcare, their prices will be cut, if they want to make good profits they are going to have to prove that their drug actually lowers the overall cost of care.”

In a piece titled “How Machine Learning Can Support Clinical Decision-Making—and Leave the Doctor in Control“, Bradley Merrill Thompson of the CDS (clinical decision support) Coalition, describes how machine learning–based CDS can allow doctors to reconcile software recommendations with their own. The CDS Coalition is also seeking public comment on draft guidelines for designing CDS software. The deadline to submit comments is July 1.

The Million Veteran Program, which was launched in 2011 and is collecting genetic, medical, lifestyle, and military exposure information from 1 million veterans, has just crossed the 560,000 enrollee mark (the hyperlinked article says 500,000, but the new number is from a tweet by Rachel Ramoni at VA Research). The intent of the program is to better understand factors that cause or are related to conditions including post-traumatic stress disorder (PTSD), schizophrenia, bipolar disorder, and more.

WIRED did a great video featuring Catalia Health’s Mabu robot companion, plus much more on the topic of AI and robotics in healthcare, from detecting cancer to providing medication reminders and nursing-type tasks. Amazon has introduced a new voice-controlled product called “Echo Look”, which includes a camera and machine-learning system that compares photos of different outfits you’re wearing and judges which one is currently more in style. As Zeynep Tufekci tweeted, “With this data, Amazon won’t be able to just sell you clothes or judge you. It could analyze if you’re depressed or pregnant and much else.”

Fitbit says the recent instance of a Flex 2 exploding, catching fire, and burning a Wisconsin woman’s arm was caused by ” external forces“, not defects with the wearable device. According to a company spokesperson, “Based on our initial investigation, including testing of her device by a leading third-party failure analysis firm, we have concluded that Ms. Mitchell’s Fitbit Flex 2 did not malfunction. The testing shows that external forces caused the damage to the device.” This suggests that the device’s lithium-ion battery didn’t overheat and explode as happened with the Samsung Galaxy Note 7 and the Basis Peak.

The Digital Health Update for May 2

Writing on the American Civil Liberties Union (ACLU) blog, patients’ rights advocate Ken Deutsch argues that the Henrietta Lacks story serves as a powerful lesson that patients deserve full control of their genetic data. As Ken states, most Americans may not realize that when they are genetically tested, the lab conducting the test usually controls that genetic data to use as they wish.

Have developments like CRISPR gene editing and IVF (which enables surrogacy and embryo selection) created ethical dilemmas that our current laws are unable to deal with? Tom Ekman, coauthor of a new book, “Babies of Technology: Assisted Reproduction and the Rights of the Child”, sits down with Salon’s Amanda Marcotte to discuss the need for updated laws that would curtail potentially devastating impacts on the children created by these technologies. A s Ekman states, “You have ethical issues raised by this new genetic engineering technology, which could very quickly bring us to the whole ‘perfect baby’ scenario.”

Can zapping your peripheral nervous system (which consists of the nerves spanning out from the brain and spinal cord) help you quickly learn a foreign language? That’s one of the goals of a new $50M Defense Advanced Research Projects Agency initiative announced this week. The funding is for eight teams to research how to improve people’s ability to learn new things. Most are targeting the vagus nerve near your neck, which connects to the brain and your gut. These devices could be placed behind your ear or on your neck, where the vagus comes close to your skin.

As Robert M. Plenge, MD, PhD,writes on his blog, a recent study in the New England Journal of Medicine provides genetic support for a pharmacologically-validated target, BAFF, in the treatment of systemic lupus erythematosus. In response, Robert asks: “Can human genetics also be used to estimate the target dose and a therapeutic window?” He states that “it is rare that human genetics provides clear evidence of a target dose or a therapeutic window.”

Jon Fingas reports that researchers have used CRISPR gene editing in mouse models to turn stem cells into cartilage that releases a biological anti-inflammatory drug when they encounter inflammation or there’s a pain flare. The hope is that this may one day replace arthritic cartilage, essentially a vaccine against arthritis.

Engadget reporter Cherlynn Low sat in on a virtual support group for sexual-assault survivors known as “Testimony”, which is a VR project that premiered at the Tribeca film festival this year. Testimony is an interactive documentary that shares the stories of five survivors of sexual assault and their journey to healing. It serves as an advocacy platform to allow the public to bear witness to those who have been silenced. Using a Gear VR headset and headphones, Cherlynn listened to a series of accounts from sexual-assault survivors, who would only talk when she looked at them.

After being blackmailed by a former boyfriend who had private images of her, Carrie Goldberg couldn’t find a lawyer who had any experience with or knew how to respond to her situation . As a result, she started her own law firm, C. A. Goldberg PLLC, which is focused on fighting for victims of online harassment, sexual assault, and blackmail. As Goldberg explains, “Sexual privacy violations are a legal issue. We need to criminalize revenge porn across all 50 states and have a federal law, as well.”

Feeling neglected by traditional scientific research and Big Pharma,7,000 patients suffering from chronic Lyme disease are conducting their own study at MyLymeData.org. Founder Lorraine Johnson, CEO atLymeDisease.org, tells BuzzFeed News reporter Stephanie Lee that she created MyLymeData to make up for the dearth of research on patients with lingering symptoms. There are currently around 20 online patient registries, including ones dedicated to cystic fibrosis, muscular dystrophy, and Alzheimer’s.

Over one million patients are members of Inspire, which is essentially a giant, online discussion community where people can use real or assumed names to share experiences, information, and advice about their medical conditions. Founded by Brian Loew, the company counts 33 employees and gets its revenue from two sources: advertising and pharma companies, who pay to identify patients to participate in clinical drug trials and market research.

TV host Conan O’Brien tried out the new virtual reality game Wilson’s Heart on Oculus Rift and the first thing he said was: “I assume I’ll be having sex today.” While the game has nothing to do with sex, Conan thinks that VR is headed in only that direction. This is obviously not the case, but he’s a comedian after all! You can watch the video here.

FEATURED EVENTS

Digital Health World Congress 2017 takes place May 23-24 in London, UK.
Complete list of global events

Follow me on Twitter @Paul_Sonnier for all the news I share each day.

SERVICES OFFERED: ADVERTISING, EXECUTIVE MANAGEMENT STRATEGY CONSULTING, AND KEYNOTE SPEAKING
If you are a digital health company, event organizer, or provider of other relevant solutions or services you can advertise in my announcements, on my website, and Twitter. Doing so puts you in front of 50,000+ targeted global prospects each week. I also provide strategic consulting and keynote speaking. Contact me for my media kit, standard plans, and pricing.

Paul Sonnier
Keynote Speaker ⋅ Management Consultant ⋅ Social Entrepreneur
Contributing Editor, Innovation & Tech Today
Founder, Digital Health group on LinkedIn ⋅ 50,000+ members
Creator, Story of Digital Health
Facebook: StoryOfDigitalHealth
Instagram: @StoryofDigitalHealth
Twitter: @Paul_Sonnier
San Diego, CA, USA