Categories

Category: Data

The Sovereignty Network will help patients make money out of your health data

By HAMISH MACDONALD 

Being a patient has always meant being at the bottom of a trickle-down pyramid in healthcare. Late to get information, our test results, our data, and as for earning the money that our healthcare data is worth – that is something the healthcare industry does without our permission or dues. We are left right out of that.

But what if we made clinical data tools available on your device, so that you could build the most valuable set of healthcare data that exists about you anywhere? What if you owned that particular data set as your personal asset? Well, we think that researchers are going to want access to it – and pay you for that access.

Not only that, how valuable would it be to have the most complete and accurate healthcare data set available about you under your ownership and control? How can you expect a doctor or yourself to reach the best conclusion with incomplete information about your health?!? Frustration, confusion, anxiety and poor health outcomes are often the result.

How The Sovereignty Network empowers you to build your own healthcare data set

Building the most valuable data set about you, for you, is what we have done at The Sovereignty Network. We elevate you as a patient to be a Data Owner. There are 4 easy steps to becoming a Data Owner and earning what your data is worth – and having a complete and accurate set of your healthcare data on hand for your peace of mind.

  1. We have clinically coded simple to answer FHIR and SNOMED CT questionnaires that cover the entire spectrum of your health. We call it “DCPLEG”. By filling out questionnaires in your personally owned and secure profile that represent your Demographic, Clinical, Psychosocial, Lifestyle, Environmental and Genomic data you paint a complete 360 degree view of your health.
  • Where Clinical data sets are also available, such as in the US via the newly implemented Patient API rule, you can also add your clinical data from your healthcare providers. The spread of the FHIR data interoperability standard around the world makes this increasingly feasible to accomplish.
  • Data Researchers are able to sit at their desktop and specify the precise criteria that they are looking for (anonymized, of course) using the same clinical codes that you and others have already filled out in your health profile above. E.g. Age, sex, condition(s), medication(s), procedures, deeper demographic information, environmental, lifestyle, psychosocial markers, etc. Through partners even individual base pairs within a whole genome can be specified. Through the Sovereignty Network they can then make you an offer that you can’t refuse, as it were. If you agree to the offer, only then can they make contact with you with their survey they invite you to complete.
  • We have invented a new class of work we call the “Data Coach” that works rather like the synaptic fluid between joints but here between the Data Researcher and you as the Data Owner. A Data Coach is a vetted healthcare professional / healthcare data expert who verifies on your behalf the specific criteria needed by the Data Researcher. If a Researcher is willing to pay you, say, $100 to fill out a 20-minute survey because you fit their desired set of criteria, you are probably willing to pay some fraction of that to qualified Data Coaches to verify the criteria. (And once verified, criteria likely don’t need to be verified for another Data Researcher).

Turning your data set into licensable income – or donating it to causes you support

Because you and only you own the copy of your healthcare data that you have built – your record, or specific parts of it, is now licensable.

Continue reading…

DNA Storage in a Yottabyte Era

By KIM BELLARD

Did you know we are living in the Zettabyte Era? Honestly, did you even know what a zettabyte is? Kilobytes, gigabytes, maybe even terabytes, sure, but zettabytes? Well, if you ran data centers you’d know, and you’d care because demand for data storage is skyrocketing (all those TikTok videos and Netflix shows add up). Believe it or not, pretty much all of that data is still stored on magnetic tapes, which have served us well for the past sixty some years but at some point, there won’t be enough tapes or enough places to store them to keep up with the data storage needs.

That’s why people are so keen on DNA storage – including me.

A zettabyte, for the record, is one sextillion bytes. A kilobyte is 1000 bytes; a zettabyte is 10007. Between gigabytes and zettabytes, by powers of 1000, come terabytes, petabytes, and exabytes; after zettabyte comes yottabytes. Back in 2016, Cisco announced we were in the Zettabyte Era, with global internet traffic reaching 1.2 zettabytes. We’ll be in the Yottabyte Era before the decade is out.

Continue reading…

Jean Drouin, Clarify Health, on the new data stack.

By MATTHEW HOLT

Clarify Health has linked (but anonymized) data on about 300m Americans, including their claims, lab, (some) EMR data and their SDOH data. They then use it to help providers, plans and pharma figure out what is going on with their patients, and how their doctors et al are behaving. CEO Jean Drouin, a French-Canadian who incidentally at one point ran strategy for the NHS in London, explained to me what Clarify does, how it’s going to help improve health care, where these data products are going next–and why they needed to raise $116m in March to build it out. Jean thinks about creating a single source of truth, and I asked him a couple of tricky questions about whether his customers would want to know the answer. A fascinating discussion. (Full transcript below)

Matthew Holt:

Hi, Matthew Holt here with another THCB Spotlight. And I’m with Jean Drouin, who has a French Canadian name, but is an American who’s lived in London–a bit like me–who is the CEO of Clarify Health. So Jean, Clarify Health is one of the new startups. You guys raised over a $110 million a couple of weeks back, which I guess is a small round these days considering what everyone else is doing.

Continue reading…

Your Health Data May Be a NFT

By KIM BELLARD

I must admit, after I wrote about digital currency last week, I did not expect to be writing about crypto anytime soon. Then I heard about “non-fungible tokens” (NFTs) and got a sense of the hype they were causing — how I could I resist?

There may even be a connection to health care. 

You may have seen the Nyan Cat (pictured below), which is not new; it turns 10 in April.   What is new is that last month its creator “sold” it.  You may be thinking, wait, the GIF is everywhere, anyone can download it, so in what sense could he “sell” it?   

That’s where NFTs come in.  As you may know, “fungible” means that two things can be interchanged; one dollar is just like any other dollar, one bitcoin is like any other bitcoin, one electron is like any other electron.  Non-fungible, then, means the item in question is unique, and this is where the “token” comes in.  Basically, NFTs use digital certificates via blockchain to mark that something is one-of-a-kind, a claim of digital ownership.

Nadya Ivanova, chief operating officer of research firm L’Atelier explained NFTs to The Wall Street Journal:

Think of it like a digital passport that comes with an asset.  They allow for this trust and authenticity to be established in a way that we haven’t been able to do before, whether it’s with physical assets or digital assets.

Artists have been using NFTs for a few years now, and auction house Christie’s is auctioning off the “First Purely Digital NFT-Based Work of Art Ever Offered by a Major Auction House,” featuring the digital artist Beeple (aka Mike Winklemann).  Christie’s promises:

…the buyer receives the artwork file containing a digital signature from the artist and all vital details including time of creation, edition size and a record of any prior sales. These details are permanently attached to the artwork, providing an enduring guarantee of value. 

NFTs have gone beyond art.  The NBA is all over this, with NBA Top Shot selling highlight clips; one of Lebron dunking just went for $200,000.  Maverick’s owner Mark Cuban is a big proponent.  “The tech is real,” he told CNBC. “The impact is real, and permanent.” 

Continue reading…

Announcing The COVID-19 Symptom Data Challenge

By FARZAD MOSTASHARI

In Partnership with the Duke-Margolis Center for Health Policy, Resolve to Save Lives, Carnegie Mellon University, and University of Maryland, Catalyst @ Health 2.0 is excited to announce the launch of The COVID-19 Symptom Data Challenge. The COVID-19 Symptom Data Challenge is looking for novel analytic approaches that use COVID-19 Symptom Survey data to enable earlier detection and improved situational awareness of the outbreak by public health and the public. 

How the Challenge Works:

In Phase I, innovators submit a white paper (“digital poster”) summarizing the approach, methods, analysis, findings, relevant figures and graphs of their analytic approach using Symptom Survey public data (see challenge submission criteria for more). Judges will evaluate the entries based on Validity, Scientific Rigor, Impact, and User Experience and award five semi-finalists $5,000 each. Semi-finalists will present their analytic approaches to a judging panel and three semi-finalists will be selected to advance to Phase II. The semi-finalists will develop a prototype (simulation or visualization) using their analytic approach and present their prototype at a virtual unveiling event. Judges will select a grand prize winner and the runner up (2nd place). The grand prize winner will be awarded $50,000 and the runner up will be awarded $25,000.The winning analytic design will be featured on the Facebook Data For Good website and the winning team will have the opportunity to participate in a discussion forum with representatives from public health agencies. 

Phase I applications for the challenge are due Tuesday, September 29th, 2020 11:59:59 PM ET.

Learn more about the COVID-19 Symptom Data Challenge HERE.

Challenge participants will leverage aggregated data from the COVID-19 symptom surveys conducted by Carnegie Mellon University and the University of Maryland, in partnership with Facebook Data for Good. Approaches can integrate publicly available anonymized datasets to validate and extend predictive utility of symptom data and should assess the impact of the integration of symptom data on identifying inflection points in state, local, or regional COVID outbreaks as well guiding individual and policy decision-making. 

These are the largest and most detailed surveys ever conducted during a public health emergency, with over 25M responses recorded to date, across 200+ countries and territories and 55+ languages. Challenge partners look forward to seeing participant’s proposed approaches leveraging this data, as well as welcome feedback on the data’s usefulness in modeling efforts. 

Indu Subaiya, co-founder of Catalyst @ Health 2.0 (“Catalyst”) met with Farzad Mostashari, Challenge Chair, to discuss the launch of the COVID-19 Symptom Data Challenge. Indu and Farzad walked through the movement around open data as it relates to the COVID-19 pandemic, as well as the challenge goals, partners, evaluation criteria, and prizes.

Continue reading…

COVID-19 is Bringing Data Privacy into the Spotlight – This is How Healthcare Companies Should Respond

By DAN LINTON

Privacy concerns across the country continue to increase, and consumers expect their healthcare information to be private. Headline-making data sales, skepticism of Silicon Valley privacy practices, and COVID-19 contact tracing concerns compounded with a general lack of consumer awareness have continued to generate an ongoing storm ofnegative press and political scrutiny.

With COVID-19 continuing to rampage throughout the country, there is a need for the contact tracing and other technology applications to assess public health. At the same time, changing HHS rules are giving Americans more access and control over their own health data. Both availability and the promise of positive impact of data on people’s lives has never been greater.

Despite the critical need and incredible potential, there is still a great deal of confusion, lack of awareness and heightened concern among consumers. Studies show that the vast majority of Americans think the potential risks of data collection outweighs the potential benefits.

Clamping down on data privacy stifles innovation, and moving forward as we’ve been doing presents a potential privacy minefield. So, what should the healthcare industry do about it?

Continue reading…

Community Organizations Can Reduce the Privacy Impacts of Surveillance During COVID-19

By ADRIAN GROPPER, MD

Until scientists discover a vaccine or treatment for COVID-19, our economy and our privacy will be at the mercy of imperfect technology used to manage the pandemic response.

Contact tracing, symptom capture and immunity assessment are essential tools for pandemic response, which can benefit from appropriate technology. However, the effectiveness of these tools is constrained by the privacy concerns inherent in mass surveillance. Lack of trust diminishes voluntary participation. Coerced surveillance can lead to hiding and to the injection of false information.

But it’s not a zero-sum game. The introduction of local community organizations as trusted intermediaries can improve participation, promote trust, and reduce the privacy impact of health and social surveillance.

Balancing Surveillance with Privacy

Privacy technology can complement surveillance technology when it drives adoption through trust borne of transparency and meaningful choice.

Continue reading…

How Traditional Health Records Bolster Structural Racism

By ADRIAN GROPPER, MD

As the U.S. reckons with centuries of structural racism, an important step toward making health care more equitable will require transferring control of health records to patients and patient groups.

The Black Lives Matter movement calls upon us to review racism in all aspects of social policy, from law enforcement to health. Statistics show that Black Americans are at higher risk of dying from COVID-19. The reasons for these disparities are not entirely clear. Every obstacle to data collection makes it that much harder to find a rational solution, thereby increasing the death toll.

In the case of medical research and health records, we need reform that strips control away from hospital chains and corporations. As long as hospital chains and corporations control health records, these entities may put up barriers to hide unethical behavior or injustice. Transferring power and control into the hands of patients and patient groups would enable outside auditing of health practices; a necessary step to uncover whether these databases are fostering structural racism and other kinds of harm. This is the only way to enable transparency, audits, accountability, and ultimately justice.

A recent review in STAT indicates that Black Americans suffer three to six times as much morbidity due to COVID-19. These ratios are staggering, and the search for explanations has not yielded satisfying answers.

Continue reading…

The New Scarlet Letter

By KIM BELLARD

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.

If you live in one of the jurisdictions that have imposed stay-at-home requirements, you’re probably making your essential excursions — grocery store, pharmacy, even walks — with a wary eye towards anyone you come across.  Do they have COVID-19?  Have they been in contact with anyone who has?  Are they keeping at least the recommended six feet away from you?  In short, who is putting you at risk?   

Well, of course, this being the 21st century, we’re turning to our smartphones to help us try to answer these questions.  What this may lead to remains to be seen.

We long ago seemed to shrug off the fact that our smartphones and our apps know where we are and where we have been.  No one should be surprised that location is of importance to tracking the spread of COVID-19.  No one should be surprised that it is already being used.  We may end up being surprised at how it will be used.

Continue reading…

A Patient’s View of the Cures Regulations

By ADRIAN GROPPER, MD

How should we react to 1,718 pages of new regulation? Let’s start by stipulating the White House and HHS perspective

“Taken together, these reforms will deliver on the promise to put patients at their center of their own health care — you are empowered with control over your own health care choices.” 

Next, let’s stipulate the patient perspective via this video lovingly assembled by e-Patient Dave, Morgan Gleason, and the folks at the Society for Participatory Medicine. In less than 3 minutes, there are 15 patient stories, each with a slightly different take on success.

Continue reading…

Registration

Forgotten Password?