While patients can often find comfort, compassion, and support in Facebook Groups dedicated to their health conditions, they don’t realize that their identity, location, and email addresses can be found quite easily by other members of their closed group — some of whom may not have well-meaning purposes for that information. Called a Strict Inclusion Closed Group Reverse Lookup (SICGRL) attack, this is a privacy violation of unprecedented magnitude.
Fred Trotter is one of the leaders of a group of activists co-led by Andrea Downing and David Harlow that is taking on Facebook to correct this health data privacy violation.
While this interview was filmed at Health Datapalooza in the Spring of this year, Fred has just published an update that details how Facebook continues to ignore the issue and remains unwilling to collaborate on a solution.
Catch up on the background behind this data privacy issue — currently, one of the most important opportunities we as healthcare innovators have to learn about what NOT to do when it comes to user privacy and sensitive data.
On Episode 94 of Health in 2 Point 00, Jess asks me about Healthy.io’s $60 million raise for at-home urine testing for kidney diseases, with the NHS on the hook & coming to the US, and Smile Direct Club going public with a $9 billion valuation—but quickly tanked (although to $7 billion). In other news, there’s a period tracker scandal with Maya and MIA Fem apps sharing sensitive data about women’s cycles and sexual activity with Facebook. Find out what Jess & I are looking forward to at Health 2.0 this week as well. See you there! —Matthew Holt
The system is unstable. We are already seeing the precursor waves of massive and multiple disturbances to come. Disruption at key leverage points, new entrants, shifting public awareness and serious political competition cast omens and signs of a highly changed future.
So what’s the frequency? What are the smart bets for a strategic chief financial officer at a payer or provider facing such a bumpy ride? They are radically different from today’s dominant consensus strategies. In this five-part series, Joe Flower lays out the argument, the nature of the instability, and the best-bet strategies.
Healthcare CFOs must look at the environment in which their system lives: Since 2007 the actual costs for the average middle-class family for many of the basics of life have decreased in real terms, while their actual costs for healthcare have risen 25%, or even more counting co-pays, deductibles, and out-of-pocket expenses. This long, continuing rise in the costs along with the continuing and increasing unreliability of the healthcare system (“Will it actually be there for me when I need it? Will it bankrupt me?”) create unyielding disruption.
I am no fortune
teller, but here are some things we can see right now that give us a sense of
Political shift: Public opinion has shifted. When polled about actual policies, healthcare has been cited repeatedly as the top concern of voters across the country. Voters’ top concerns are cost, the risk to patient protections in the ACA, and threats to “reform” Medicare by weakening it. The popularity of “single payer” proposals is a direct result of the cost and uncertainty of healthcare, a simple cry to “Do something!” Under this pressure we are more likely to see drastic solutions proposed and passed at the federal and state level or embodied in regulatory changes and lawsuits against industry practices.
Degradation of American life: With the opioid epidemic, the rise in suicides, the actual regression in life expectancy, and the increasing income and wealth divide, people increasingly feel that the healthcare industry is just not helping. They feel it is in fact part of the problem. The feeling that there is no one there to help us adds to the desperation of many parts of American society and heightens the political cost of the healthcare issue.
Public awareness: Healthcare is intensely personal, visceral. It’s crazy-making. Surprise bills, balance bills, other bills slipped through loopholes in the fine print or even in unwritten industry practices—what the industry considers standard operating procedure, the customers view as shocking, aggressive, and financially crushing.
The rebellion of the buyers: The percentage of buyers—such as employers, unions, and pension plans—telling various polls that healthcare costs represent a major problem for their business has more than doubled in the last five years and is now a majority. Buyers are pushing for choices to control costs and manage quality. They are beginning in greater numbers to demand reference pricing tied to Medicare rates, direct access to competitive bundled prices, and price transparency through centers of excellence, high performance networks and accountable care organizations. Some 65% of employers plan on implementing direct primary care in onsite or near-site clinics by 2020. Buyers are increasingly willing to take their beneficiaries elsewhere if your business can’t meet their demands.
In the Pacific Northwest, “accelerator-slash-think tank” Cambia Grove is quickly expanding as the region’s go-to healthcare innovation hub. Fully funded by Cambia Health Solutions, the organization is functioning as a neutral party to bring startups and healthcare system incumbents together to identify innovation priorities. What else is happening in health tech in Seattle, especially with a few of those famous big consumer tech companies headquartered up there? Tune in to find out!
Filmed at the Together.Health Spring Summit at HIMSS 2019 in Orlando, Florida, February 2019.
According to the California Health Care Foundation, from
2012-2014, nearly 20% of Californian adults who sought mental health treatment
did not receive it. It is believed that these figures may even be understated,
as The Substance Abuse and Mental Health Services Administration (SAMHSA) has cited that
nearly 60% of American adults with mental illness do not receive any treatment.
Unmet mental health
needs in California are attributed to a lack of access to appropriate services
and providers, as well as the cost of care, a factor that is often exacerbated
by a lack of health insurance.
mental health services play an important role in supporting those in need,
novel technologies can complement standard care delivery and provide
individuals and communities with more accessible and optimized mental health
services that focus on prevention, early intervention, family support, and
The Help@Hand Project is a California statewide collaborative project to bring technology-based mental health solutions to the public mental health system through a highly innovative “suite” of digital solutions. The project aims to expand access to mental health services by engaging and treating individuals that are underserved in the current traditional care delivery model. With technology becoming an integral part of everyday life, the collaborative hopes to leverage familiar devices as means to connect and better serve those in need. This Help@Hand project will utilize applications on smartphones, tablets, digital devices, or computers as a tool to engage, support and give access to treatment using innovative virtual engagement strategies. Focus areas include:
and Digital Therapeutics
Evidence Based Therapy Utilizing an Avatar
Data Collection for Early Detection and Intervention
Sharing a hotel room, however, does not a marriage make. In order to get better digital health interventions to market faster, we need what I’m calling a Partnership for Innovators, Policymakers and Evidence-generators (PIPE). As someone who functions variously in the policy, tech and academic worlds, I believe PIPE needn’t be a dream.
Todd Park is known for being excited, but THIS TIME the co-Founder and Executive Chairman of Devoted Health is excited that it’s the 10th Anniversary of Health Datapalooza, a gathering and initiative he had a hand in creating when he served Barack Obama as the Chief Technology Officer of the United States. What else is energizing Todd? How about value-based payment finally taking hold and the opportunities that’s opening up for payment model innovation and that will allow the disruption of healthcare to achieve ‘escape velocity.’
Filmed at Health Datapalooza in Washington DC, March 2019.
Jessica DaMassa is the host of the WTF Health show & stars in Health in 2 Point 00 with Matthew Holt.
Get a glimpse of the future of healthcare by meeting the people who are going to change it. Find more WTF Health interviews here or check out www.wtf.health.
By ROBERT C. MILLER, JR. and MARIELLE S. GROSS, MD, MBE
This piece is part of the series “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?” which explores whether it’s possible to advance interoperability while maintaining privacy. Check out other pieces in the series here.
The problem with porridge
Today, we regularly hear stories of research teams using artificial intelligence to detect and diagnose diseases earlier with more accuracy and speed than a human would have ever dreamed of. Increasingly, we are called to contribute to these efforts by sharing our data with the teams crafting these algorithms, sometimes by healthcare organizations relying on altruistic motivations. A crop of startups have even appeared to let you monetize your data to that end. But given the sensitivity of your health data, you might be skeptical of this—doubly so when you take into account tech’s privacy track record. We have begun to recognize the flaws in our current privacy-protecting paradigm which relies on thin notions of “notice and consent” that inappropriately places the responsibility data stewardship on individuals who remain extremely limited in their ability to exercise meaningful control over their own data.
Emblematic of a broader trend, the “Health Data Goldilocks Dilemma” series calls attention to the tension and necessary tradeoffs between privacy and the goals of our modern healthcare technology systems. Not sharing our data at all would be “too cold,” but sharing freely would be “too hot.” We have been looking for policies “just right” to strike the balance between protecting individuals’ rights and interests while making it easier to learn from data to advance the rights and interests of society at large.
What if there was a way for you to allow others
to learn from your data without compromising your privacy?
To date, a major strategy for striking this balance has involved the practice of sharing and learning from deidentified data—by virtue of the belief that individuals’ only risks from sharing their data are a direct consequence of that data’s ability to identify them. However, artificial intelligence is rendering genuine deidentification obsolete, and we are increasingly recognizing a problematic lack of accountability to individuals whose deidentified data is being used for learning across various academic and commercial settings. In its present form, deidentification is little more than a sleight of hand to make us feel more comfortable about the unrestricted use of our data without truly protecting our interests. More of a wolf in sheep’s clothing, deidentification is not solving the Goldilocks dilemma.
Tech to the rescue!
Fortunately, there are a handful of exciting new technologies that may let us escape the Goldilocks Dilemma entirely by enabling us to gain the benefits of our collective data without giving up our privacy. This sounds too good to be true, so let me explain the three most revolutionary ones: zero knowledge proofs, federated learning, and blockchain technology.
The drought is over! On Episode 93 of Health in 2 Point 00, Jess and I talk deals, deals, deals. Ginger, which provides digital mental health services, raises $35 million and is growing quite fast; VillageMD, one of numerous companies who are trying to figure out a new way to do primary care, raises $100 million; Health Recovery Solutions, which does remote patient monitoring, gets $10 million. In other news, Livongo’s stock price collapsed a little bit, but it was crazy when it first came out so now prices are more “normal”; uBiome files for bankruptcy, and Tula Health’s $2.5 million raise gets quite possibly the best press release we’ve ever seen (you’ve got to hear this). —Matthew Holt
Catalyst is excited to announce the finalists for Robert Wood Johnson Foundation’s Home and Community Based Care and Social Determinants of Health Innovation Challenges! The three finalists from each Challenge will compete in an exciting Live Pitch on September 16th, from 2:30-4:30pm, at this year’s Health 2.0 Conference in Santa Clara. They will demo their technology in front of a captivated audience of health care professionals, investors, provider organizations, and members of the media. The first place winners will be featured on the Conference Main Stage, September 17th at 3:15pm. Winners will be awarded $40,000 for first place, $25,000 for second place, and $10,000 for third place.
If you are attending the Health 2.0 Conference, join us to
see the finalists showcase their innovative solutions.
& Community Based Care Innovation Challenge Finalists
Heal – Heal doctor house calls paired with Heal Hub remote patient monitoring and telemedicine offer a complete connected care solution for patients with chronic conditions.
Ooney – PrehabPal, a home-based web-app for older adults, delivers individualized prehabilitation to accelerate postoperative functional recovery and return to independence after surgery.
Wizeview – A company that uses artificial intelligence to automate and organize information collected during home visits, supporting the management of medically complex populations at the lowest cost per encounter.
Determinants of Health Innovation Challenge Finalists
Community Resource Network – The Social Determinants of Health Client Profile, a part of the Community Resource Network, creates a whole-person picture across physical, behavioral, and social domains to expedite help for those most at risk, fill in the gaps in care, and optimize well-being.
Open City Labs – A company that matches patients with community services and government benefits that address SDoH seamlessly. The platform will integrate with HIEs to automate referrals, eligibility screening & benefits enrollment.
Social Impact AI Lab – New York – A consortium of nonprofit social services agencies and technology providers with artificial intelligence solutions to address social disconnection in child welfare.