Joining Matthew Holt (@boltyboy) for the 100th #THCBGang on Thursday August 4 were Suntra Modern Recovery CEO JL Neptune (@JeanLucNeptune); Consumer advocate & CEO of AdaRose, Lygeia Ricciardi (@Lygeia); and the Light Collective’s Andrea Downing (@bravebosom). Sadly fierce patient activist Casey Quinlan (@MightyCasey) had a Mets party flare up and couldn’t join at the last minute. There was a lot of chat about data and privacy, and even some ideas about what a future where patients data flowed but patients rights were respected might look like!
You can see the video below & if you’d rather listen than watch, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels.
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.
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.
TSMC owns 50% of the world’s microchip manufacturing market, and along with South Korea’s Samsung, is one of only two companies currently producing the ultra-small 5-nanometer chips. Next year, TSMC will take sole ownership of the lead with a 3-nanometer chip. In this field, the smaller the better. (For comparison, most of China’s output is 14 to 28 nanometers.)
U.S. Silicon Valley companies like Apple, Qualcomm, Nvidia, AMD, and recently Intel contract with TSMC rather than produce chips on their own. In addition, the key machines and chemicals necessary to produce the chips are willing supplied to TSMC by U.S. and European manufacturers. TSMC’s secret sauce, according to Friedman, is “trust.” As he writes, “Over the years, TSMC has built an amazing ecosystem of trusted partners that share their intellectual property with TSMC to build their proprietary chips.”
“Trust me” is not a phrase often associated with intellectual property. Consider, for example, Washington Post’s reporting the very same day as Friedman’s under the banner, “In secret vaccine contracts with governments, Pfizer took hard-line in the push for profit, report says.” The article reveals documents in a Public Citizen report that confirms that Pfizer has been maximizing their vaccine profits “behind a veil of strict secrecy, allowing for little public scrutiny… even as demand surges…”
As I describe in my book “Code Blue: Inside the Medical Industrial Complex” (Grove 2020), Pfizer’s focus on intellectual property as a commercial weapon has a history that extends back a half-century.
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.
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.
A question I hear quite often, sometimes whispered, is: Why should anyone care about health data interoperability? It sounds pretty technical and boring.
If I’m talking with a “civilian” (in my world, someone not obsessed with health care and technology) I point out that interoperable health data can help people care for themselves and their families by streamlining simple things (like tracking medication lists and vaccination records) and more complicated things (like pulling all your records into one place when seeking a second opinion or coordinating care for a chronic condition). Open, interoperable data also helps people make better pocketbook decisions when they can comparison-shop for health plans, care centers, and drugs.
Sometimes business leaders push back on the health data rights movement, asking, sometimes aggressively: Who really wants their data? And what would they do with it if they got it? Nobody they know, including their current customers, is clamoring for interoperable health data.
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.
US healthcare is exceptional among rich economies. Exceptional in cost. Exceptional in disparities. Exceptional in the political power hospitals and other incumbents have amassed over decades of runaway healthcare exceptionalism.
The latest front in healthcare exceptionalism is over who profits from patient records. Parallel articles in the NYTimes and THCB frame the issue as “barbarians at the gate” when the real issue is an obsolete health IT infrastructure and how ill-suited it is for the coming age of BigData and machine learning. Just check out the breathless announcement of “frictionless exchange” by Microsoft, AWS, Google, IBM, Salesforce and Oracle. Facebook already offers frictionless exchange. Frictionless exchange has come to mean that one data broker, like Facebook, adds value by aggregating personal data from many sources and then uses machine learning to find a customer, like Cambridge Analytica, that will use the predictive model to manipulate your behavior. How will the six data brokers in the announcement be different from Facebook?
The NYTimes article and the THCB post imply that we will know the barbarians when we see them and then rush to talk about the solutions. Aside from calls for new laws in Washington (weaken behavioral health privacy protections, preempt state privacy laws, reduce surprise medical bills, allow a national patient ID, treat data brokers as HIPAA covered entities, and maybe more) our leaders have to work with regulations (OCR, information blocking, etc…), standards (FHIR, OAuth, UMA), and best practices (Argonaut, SMART, CARIN Alliance, Patient Privacy Rights, etc…). I’m not going to discuss new laws in this post and will focus on practices under existing law.
Patient-directed access to health data is the future. This was made clear at the recent ONC Interoperability Forum as opened by Don Rucker and closed with a panel about the future. CARIN Alliance and Patient Privacy Rights are working to define patient-directed access in what might or might not be different ways. CARIN and PPR have no obvious differences when it comes to the data models and semantics associated with a patient-directed interface (API). PPR appreciates HL7 and CARIN efforts on the data models and semantics for both clinics and payers.
This post is part of the series “The Health Data Goldilocks Dilemma: Privacy? Sharing? Both?”
Introduction
In our previous post, we described the “Wild West of Unprotected Health Data.” Will the cavalry arrive to protect the vast quantities of your personal health data that are broadly unprotected from sharing and use by third parties?
Congress is seriously considering legislation to better
protect the privacy of consumers’ personal data, given the patchwork of
existing privacy protections. For the most part, the bills, while they may
cover some health data, are not focused just on health data – with one
exception: the “Protecting Personal Health Data Act” (S.1842), introduced by
Senators Klobuchar and Murkowski.
In this series, we committed to looking across all of the
various privacy bills pending in Congress and identifying trends,
commonalities, and differences in their approaches. But we think this bill,
because of its exclusive health focus, deserves its own post. Concerns about
health privacy outside of HIPAA are receiving increased attention in light of
the push for interoperability, which makes this bill both timely and
potentially worth of your attention.
For example, greater interoperability with patients means that even more medical and claims data will flow outside of HIPAA to the “Wild West.” The American Medical Association noted:
“If patients access their health
data—some of which could contain family history and could be sensitive—through
a smartphone, they must have a clear understanding of the potential uses of
that data by app developers. Most patients will not be aware of who has access
to their medical information, how and why they received it, and how it is being
used (for example, an app may collect or use information for its own purposes,
such as an insurer using health information to limit/exclude coverage for
certain services, or may sell information to clients such as to an employer or
a landlord). The downstream consequences of data being used in this way may
ultimately erode a patient’s privacy and willingness to disclose information to
his or her physician.”
The rather esoteric issue of a national patient identifier has come to light as a difference between two major heath care bills making their way through the House and the Senate.
The bills are linked to outrage over surprise medical bills but they have major implications over how the underlying health care costs will be controlled through competitive insurance and regulatory price-setting schemes. This Brookings comment to the Senate HELP Committee bill summarizes some of the issues.
Who Cares?
Those in favor of a national patient identifier are mostly hospitals and data brokers, along with their suppliers. More support is discussed here. The opposition is mostly on the basis of privacyand libertarian perspective. A more general opposition discussion of the Senate bill is here.
Although obscure, national patient identifier standards can help clarify the role of government in the debate over how to reduce the unusual health care costs and disparities in the U.S. system. What follows is a brief analysis of the complexities of patient identifiers and their role relative to health records and health policy.
Our Experience on Facebook Offers Important Insight Into Mark Zuckerberg’s Future Vision For Meaningful Groups
By ANDREA DOWNING
Seven years ago, I was utterly alone and seeking support as I navigated a scary health experience. I had a secret: I was struggling with the prospect of making life-changing decisions after testing positive for a BRCA mutation. I am a Previvor. This was an isolating and difficult experience, but it turned out that I wasn’t alone. I searched online for others like me, and was incredibly thankful that I found a caring community of women who could help me through the painful decisions that I faced.
As I found these women through a Closed Facebook Group, I began to understand that we had a shared identity. I began to find a voice, and understand how my own story fit into a bigger picture in health care and research. Over time, this incredible support group became an important part of my own healing process.
This group was founded by my friends Karen and Teri, and has a truly incredible story. With support from my friends in this group of other cancer previvors and survivors I have found ways to face the decisions and fear that I needed to work through.
Facebook recently had a summit to share that groups are at the heart of their future. We had a summit of our own with some of the amazing leaders within the broader cancer community on social media.
