punkish: Public Good v. Private Goods

# Public Good v. Private Goods
## extracting public good from private data

INSERM atelier 246, Bordeaux, France • May 17, 2017

Puneet Kishor (Plazi)

Released under a [CC0 Public Domain Dedication](https://creativecommons.org/publicdomain/zero/1.0/).

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## Help

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???

notes here

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## Data, What Data?

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## Data, What Data?

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**Citizen’s Data**

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**Citizen’s Data** via **Different Sources**
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**Citizen’s Data** via **Different Sources** that are **Qualitatively Different,**
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**Citizen’s Data** via **Different Sources** that are **Qualitatively Different,** with [**Citizens Consent**](Citizens-Consent),
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---

**Citizen’s Data** via **Different Sources** that are **Qualitatively Different,** with [**Citizens Consent**](Citizens-Consent), are stored in [**Consolidated Repos**](Perfect-Health-Repo-Desiderata) making data available at **Varying Levels of Openness** and **De-Identification** made possible by a [**Health Privacy API**](Health-Privacy-API). The repos are managed by a [**Shared Governance**](Governance-Model-for-Health-Repo) enabling **Reuse** 
---

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## Governance Options

The party that collects data from me should explain to me:

- where that data will be kept and how will it be kept safe
- who will be able to access it
- what will be done with it 
- what are the risks
- what are the benefits to me and to society

If there are plans to use my data beyond what is or those who are described above,

It should be explained to me that some data use may mean that if I change my mind, it may not be possible to stop others from using my data.

In any case, my identity should not be revealed to anyone other than a medical researcher who has committed to protecting my identity.

In case of a security breach, I will be made whole.

---

## Comparison with the GeoSpatial Domain

The same movement happened in the geospatial area 20+ years ago.

???

The geospatial domain was dominated by the government. Only governments were rich enough to own and launch satellites, carry out surveys, and air photography. Then the action shifted to the private sector. And finally, the individuals got empowered because of two reasons:

- the geographic space is interesting and important to all of us, esp. to the young (who tend to be computer savvy)
- data became freely available, so there was raw material to play with

A similar shift seems to be taking place in the health/medical domains, though delayed by about a couple of decades

<h2>The shift may be incomplete</h2>

<p>Qualitative differences between geo and health data</p>

???

However, the second shift, from private sector to individuals, as it happened in the geospatial world, is far from assured in the health/medical fields. Again, the lack of data because of security and privacy concerns, and a lack of interest in health for most people, especially the young and the computer savvy, are the stumbling blocks.

---

## Action moving from public to private sector

Private sector is making large investment in the medical/health domains

???

Because of expense, social nature of the task, and the associated privacy and security considerations, this sector has been the purview of governments, for the most part. But increasingly, private companies are investing heavily into health.
This is not unlike the geospatial domain, but is phase-delayed by about a couple of decades, and affected by a couple of important differences that might block similar progress. The good news is that the private sector is taking over, and as such, most of the badly needed investment and innovation, particularly when it comes to balancing the desire for sharing with the need for privacy, is going to come from the private sector.

<h2>Effect</h2>

<p>Unintended as well as intended but not widely-advertised side-effects</p>

???

The bad thing is that we are already witnessing unintended as well as intended but not widely-advertised side-effects to this. And the ugly part is that there will be many more undesirable consequences in the future. The necessary checks and balances—consent, governance, and reparations from harm—will have to come from the public sector in the widest to the narrowest sense, that is, from the government to the common people.

---

## The Good

### The Private Sector is Taking Over
### They can solve technical problems faster than the public can

## The Bad

### Unintended Side-Effects

## The Ugly

### Undesirable Consequences

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## The Good

### Artificial intelligence could build new drugs faster than any human team

> [Atomwise](http://www.atomwise.com/), a San Francisco-based startup and Y Combinator alum, has built a system it calls [AtomNet](https://arxiv.org/pdf/1510.02855.pdf) (pdf), which attempts to generate potential drugs for diseases like Ebola and multiple sclerosis.

[more](https://qz.com/963484/artificial-intelligence-could-build-new-drugs-faster-than-any-human-team/)

---

## The Good

### Google’s Health Moonshot Comes Back to Earth

> Opening on April 19, the study is called Baseline, as in a starting point for what healthy biometric data should look like. It’s the first serious public test for [Verily Life Sciences](https://verily.com/), formerly Google Life Sciences.

[more](https://www.bloomberg.com/news/articles/2017-04-19/google-s-health-moonshot-comes-back-to-earth)

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## The Good

### Everyone else as well

> At the same time, Apple, Microsoft, and Samsung are all experimenting with artificial intelligence, data analysis, and wearable gadgets in the field, and venture capitalists continue to pour cash into companies that pass their seriousness tests.

[more](https://www.bloomberg.com/news/articles/2017-04-19/google-s-health-moonshot-comes-back-to-earth)

---

## The Good

### Apple’s sensor experts are developing much more than an iWatch

[more](http://www.computerworld.com/article/2476078/healthcare-it/apple-s-sensor-experts-are-developing-much-more-than-an-iwatch.html)

---

## The Good

### Apple has a secret team working on the holy grail for treating diabetes

> Apple has a secret group of biomedical engineers developing sensors to monitor blood sugar levels, sources tell CNBC. The initiative was initially envisioned by Steve Jobs before his death. If successful, the advance could help millions of diabetes patients and turn devices like the Apple Watch into a must-have

[more](http://www.cnbc.com/2017/04/12/apple-working-on-glucose-sensors-diabetes-treatment.html)

???

- [Varian Medical Systems](https://www.varian.com/about-varian/varian-technologies) (medical devices and software for treating cancer and other medical conditions with radiotherapy, radiosurgery, proton therapy, and brachytherapy) 
- Vital Connect (develops wearable biosensors)
- [Masimo Corporation](http://www.masimo.com/About-Masimo/about-masimo/) (develops and manufactures innovative noninvasive patient monitoring technologies)
- Senseonics (develops glucose monitoring products) 
- Palyon Medical
- Sano Intelligence and C8 MediSensors (focused on blood sensors)
- St. Jude Medical (develops low cost devices for the treatment of epidemic disease)
- Proteus Digital Health (develops sensors to monitor heart rate, respiration, motion and temperature)
- Nike (Fuelband)
- Cercacor (develops non-invasive patient monitoring technologies)
- AccuVein (developers of a vein scanning system)

---

## The Good

### Samsung Digital Health

> The Samsung Digital Health Initiative leverages an array of hardware and software technologies designed to bring developers, healthcare professionals, academics and health enthusiasts together to create a healthier world. The key component of the Digital Health Initiative is a new open reference design platform tailored to take advantage of the latest sensors, behavioral algorithms, battery technologies and displays. This platform is attracting the brightest minds and the most creative innovators to work with Samsung to accelerate innovation in personal health technology.

[more](http://www.samsung.com/us/ssic/innovation_areas/#digital-health)

---

## The Good

### Samsung reveals 24 digital health partners including Aetna, Cigna, Humana

November 13, 2014

> Samsung's commercial partners for digital health currently include Nike, Aetna, Cigna, Cleveland Clinic, dacadoo, Edamam, Humana, Fitbug, Lark, Merck, Preventice, Skimble, WellDoc, and Your.MD. Samsung's research partners include UCSF, imec, Bloom Technologies, EarlySense, Elfi Tech, Stanford University, LifeBeam, Sensifree, SleepRate, and uptick. While Kaiser Permanente wasn't listed as an official partner by Samsung, Kaiser Permanente CMIO Dr. Jon Mattison was one of they keynotes at the event.

[more](http://www.mobihealthnews.com/38252/samsung-reveals-24-digital-health-partners-including-aetna-cigna-humana-welldoc/)

---

## The Good

### Exclusive: Facebook plots first steps into healthcare

Oct 3, 2014

> In recent months, the sources said, the social networking giant has been holding meetings with medical industry experts and entrepreneurs, and is setting up a research and development unit to test new health apps. Facebook is still in the idea-gathering stage, the people said.

> Privacy, an area where the company has faced considerable criticism over the years, will likely prove a challenge. This week, the company apologized to users for manipulating news feeds for the purposes of research.

> Facebook declined to comment on its health care plans.

[more](http://www.reuters.com/article/us-facebook-health-idUSKCN0HS09720141003)

---

## The Bad: Unintended Side-Effects

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## The Bad

### The woman whose phone ‘misdiagnosed HIV’

> Esther sells water on the side of the road in Kenya for a few dollars a day. She also owns a smartphone and ownership of such a device should, according to most of the received wisdom, empower its owner. But in fact it did quite the opposite for her when she acquired an app. It claimed to diagnose HIV simply by analysing her fingerprint on the touch screen. When researchers met her at her roadside workplace, she was worried.

[more](http://www.bbc.com/news/technology-39371100)

---

## The Bad

### Universities’ AI Talent Poached by Tech Giants

> Google, Baidu, Facebook lure away top computer science researchers responsible for training students

[more](https://www.wsj.com/articles/universities-ai-talent-poached-by-tech-giants-1479999601)

---

## The Bad

### Academics Anonymous: why I’m leaving academia

> In a few weeks, I will be leaving my career in academic research. The pleasure of contributing to scientific knowledge has disappeared and I am overworked and under-compensated with no semblance of a work-life balance. The cons of academia now far outweigh the pros, so I am walking away.

[more](https://www.theguardian.com/higher-education-network/blog/2014/may/01/academic-anonymous-leaving-academia)

---

## The Bad

### AI Academics Leaving for Private Sector Could Have Unintended Consequences

> In the emergent war to have the best artificial intelligence capability, academia might have the most casualties. According to the National Science Foundation, 57 percent of new computer-science doctoral graduates in the United States take industry jobs, meaning they leave academia for the private sector. This is compared to 38 percent a decade ago, according to The Wall Street Journal.

[more](https://medium.com/talent-economy/ai-academics-leaving-for-private-sector-could-have-unintended-consequences-ddf448ca9a9f)

---

## The Bad

### Restructuring the NIH’s grant programs to ensure stable careers in science

Jan 28, 2013

> But as palpable as the creative energy is, it is accompanied by an equally palpable sense of dread. We are in one of the worst periods of scientific funding I – and my more senior colleagues – can remember. People aren’t just worried about whether their next grant will get funded, they’re worried about whether a career in academic or public science is even viable

[more](http://www.michaeleisen.org/blog/?p=1270)

---

## The Bad

### Kate Clancy’s Short Grant Rant: On Broken Promises

January 27, 2013

> the NIH, and American science funding in general, is not just sacrificing a generation of scientists. They are sacrificing American science, period. I don’t know who thinks things are going to get better, that somehow we’re just the one generation that is screwed. Funding lines are going to keep getting worse. Even in NIH grantwriting seminars, I’m getting told by people who sit on review panels that there is an increasingly high degree in subjectivity in who gets funded because once a grant is in the top 20%, how do you tell the difference between the top 10% and 20%? Poor reading, pettiness, cronyism – this is not what I’m hearing from sour grapes junior faculty, this is what I’m hearing from R01-funded faculty who sit on NIH review panels.

[more](https://blogs.scientificamerican.com/context-and-variation/short-grant-rant-on-broken-promises/)

---

## The Bad

### Why So Many Academics Quit and Tell

December 12, 2013

> There’s nothing new, of course, about academics leaving the ivory tower. But the exploding genre of “Quit Lit” demonstrates that saying goodbye is becoming an increasingly public act.

[more](https://chroniclevitae.com/news/216-why-so-many-academics-quit-and-tell)

---

## The Bad

### Quit Lit: The Vitae List

The Chronicle Vitae’s Quit Lit has 83 entries already. [more](https://docs.google.com/spreadsheets/d/1OODoiZKeAtiGiI3IAONCspryCHWo5Yw9xkQzkRntuMU/edit#gid=0)

---

## The Ugly: Undesirable Consequences

---

## The Ugly

### From “private by default, public by choice”

---

## The Ugly

### To “public by default, private by choice”

---

## The Ugly

### To “public by default, limited choice”

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## The Ugly

### To “public by default, no choice”

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## Surveillance Capitalism

Four characteristics of business driven by computer-mediated transactions: 
- ‘data extraction and analysis,’ 
- ‘new contractual forms due to better monitoring,’ 
- ‘personalization and customization,’ and 
- ‘continuous experiments.’

This architecture produces a distributed and largely uncontested new expression of power that Zuboff calls: ‘Big Other.’ It is constituted by unexpected and often illegible mechanisms of extraction, commodification, and control that effectively exile persons from their own behavior while producing new markets of behavioral prediction and modification. Surveillance capitalism challenges democratic norms and departs in key ways from the centuries-long evolution of market capitalism.

<cite>Zuboff, Shoshana, Big Other: Surveillance Capitalism and the Prospects of an Information Civilization (March 2015). Journal of Information Technology, Vol. 30, Issue 1, pp. 75-89, 2015. Available at SSRN: https://ssrn.com/abstract=2592441 or http://dx.doi.org/10.1057/jit.2015.5</cite>
[more](https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2594754)

---

## The Ugly

### Bose headphones have been spying on customers, lawsuit claims

April 19, 2017

> Bose knows what you're listening to. At least that's the claim of a proposed class-action lawsuit filed late Tuesday in Illinois that accuses the high-end audio equipment maker of spying on its users and selling information about their listening habits without permission.

> The filing also alleges that Bose wasn't just collecting the information. It was also sharing it with a data mining company called Segment.io …

[more](https://www.washingtonpost.com/news/the-switch/wp/2017/04/19/bose-headphones-have-been-spying-on-their-customers-lawsuit-claims/)

---

## The Ugly

### EFF: Google Chromebook is still spying on grade school students

April 19, 2017

> Privacy advocates at the Electronic Frontier Foundation have again outlined how Google is successfully dumping millions of low-cost Chromebooks on U.S. schools, enabling the mass collection and storage of information on children without the consent of their parents or even the understanding of many school administrators.

[more](http://appleinsider.com/articles/17/04/19/eff-google-chromebook-is-still-spying-on-grade-school-students)_

---

## The Ugly

### Google DeepMind and healthcare in an age of algorithms

Julia Powles and Hal Hodson

> Data-driven tools and techniques, particularly machine learning methods that underpin artificial intelligence, offer promise in improving healthcare systems and services. One of the companies aspiring to pioneer these advances is DeepMind Technologies Limited, a wholly-owned subsidiary of the Google conglomerate, Alphabet Inc. In 2016, DeepMind announced its first major health project: a collaboration with the Royal Free London NHS Foundation Trust, to assist in the management of acute kidney injury. Initially received with great enthusiasm, the collaboration has suffered from a lack of clarity and openness, with issues of privacy and power emerging as potent challenges as the project has unfolded. Taking the DeepMind-Royal Free case study as its pivot, this article draws a number of lessons on the transfer of population-derived datasets to large private prospectors, identifying critical questions for policy-makers, industry and individuals as healthcare moves into an algorithmic age.

[more](http://link.springer.com/article/10.1007%2Fs12553-017-0179-1)

---

## The Ugly

### Google’s DeepMind and the NHS: A glimpse of… the future of healthcare

April 4, 2017

> It's not quite clear who will be benefitting most from these deals: DeepMind or the NHS. Moorfields' scans will allow the Google subsidiary to improve the commercial viability of its systems, by improving the accuracy with which it can detect particular eye diseases -- potentially making a commercial version of the software a must-buy for the hospital. However, according to a freedom of information (FOI) request filed by ZDNet, there has been no deal agreed between the two organisations to roll-out the software once it's trained up, and DeepMind is only paying Moorfields for the staff time involved in processing the data before handing it on to the AI company.

[more](http://www.zdnet.com/article/googles-deepmind-and-the-nhs-a-glimpse-of-what-ai-means-for-the-future-of-healthcare/)

---

## The Ugly

### Revealed: Google AI has access to huge haul of NHS patient data

29 April 2016

> A data-sharing agreement obtained by New Scientist shows that Google DeepMind's collaboration with the NHS goes far beyond what it has publicly announced

[more](https://www.newscientist.com/article/2086454-revealed-google-ai-has-access-to-huge-haul-of-nhs-patient-data/)

---

## The Ugly

### Google’s DeepMind shouldn’t suck up our NHS records in secret

4 May 2016

> When it was revealed that Google’s London-based company DeepMind would be able to access the NHS records of 1.6 million patients who use three London hospitals run by the Royal Free NHS trust – Barnet, Chase Farm and the Royal Free – it rang alarm bells.

[more](https://www.theguardian.com/commentisfree/2016/may/04/googles-deepmind-shouldnt-be-sucking-up-our-nhs-records-in-secret)

---

## The Ugly

### NHS patient data audit uncovers ‘significant lapses’ in confidentiality

17 June 2014

> The audit, led by former Terrence Higgins Trust chief executive Sir Nick Partridge, found that 3,059 data releases had taken place between 2005 and 2013 – with a detailed examination of 10% of these. It found "lapses in the strict arrangements that were supposed to be in place to ensure that people's personal data would never be used improperly". Of those examined in depth, it was found that one research programme had no legal authority to get patient-identifiable data but was still accessing NHS records in 2014. And a further eight were still getting mortality data – which could potentially pinpoint individual patients – without approval. In all nine cases medical researchers have suspended their work.

[more](https://www.theguardian.com/society/2014/jun/17/nhs-patient-data-audit-significant-lapses-confidentiality-hscic)

---

## The Ugly

<img src="img/motherboard-another-day-another-hack.jpg" width="100%" alt="Another Day Another Hack">
[more](https://motherboard.vice.com/en_us/topic/Another-Day-Another-Hack)

---

## The Ugly

### Hackers Hit Dozens of Countries Exploiting Stolen N.S.A. Tool

May 12, 2017

> SAN FRANCISCO — Hackers exploiting malicious software stolen from the National Security Agency executed damaging cyberattacks on Friday that hit dozens of countries worldwide, forcing Britain’s public health system to send patients away, freezing computers at Russia’s Interior Ministry and wreaking havoc on tens of thousands of computers elsewhere.

<blockquote>
<p class="hilite">The attacks on Friday appeared to be the first time a cyberweapon developed by the N.S.A., funded by American taxpayers and stolen by an adversary had been unleashed by cybercriminals against patients, hospitals, businesses, governments and ordinary citizens.</p>
</blockquote>

[more](https://mobile.nytimes.com/2017/05/12/world/europe/uk-national-health-service-cyberattack.html)

---

## Inspire

### Taking Matter Into Their Own Hands

> Members connect across time and space: around the globe 24 hours a day/ 7 days a week.  They are resources for each other sharing health information and support without regard to location, background or status.  Together they reduce the feelings of isolation experienced by those with chronic conditions, cancer, rare diseases. We all believe that “Together we’re better.”

[more](https://corp.inspire.com/meet-inspire/our-story/)

---

## Inspire

### Taking Matter Into Their Own Hands

<blockquote>
The idea for Inspire was born at a 2005 event sponsored by the pharmaceutical industry, in which Loew’s wife, an organic chemist, was employed. Several people at the event were in the research-and-development end of the drug business.

“These R&D companies with gigantic budgets described their biggest problem as recruiting patients for clinical trials,” he said. “Privacy in America makes it appropriately illegal to buy lists of patients.”

A lightbulb went off, he said: “What if you create a social network for patients and caregivers and allow them to raise their hands if they want to participate in clinical trials?”
</blockquote>

---

## Inspire

### Taking Matter Into Their Own Hands

<blockquote>
“Patient centricity really matters,” said Loew, who owns a big chunk of the company, along with investors and employees.

Membership is free and increasing by 1,000 per day. Seventy-eight percent of members are women.

“Women are the chief medical officers of the home,” Loew said. “Many of our female members represent a member of the family — husbands, fathers, fathers-in-law, siblings, children. So sometimes a woman would join and say, ‘I’m a parent of a ‘preemie,’ a child of someone with a medical condition, a sister of someone else.’ ”
</blockquote>

*More than a million patients flock to this website. Drug companies are in hot pursuit.*

[more](https://www.washingtonpost.com/business/economy/more-than-a-million-patients-flock-to-this-website-drug-companies-are-in-hot-pursuit/2017/04/27/7b533944-29ec-11e7-a616-d7c8a68c1a66_story.html)

---

## Data, What Data?

.left-column[
  ### Non-Human
]
.right-column[
    Normal open access principles such as FAIR apply  
    See [Licensing FAQ](/Licensing-FAQ)
]

---

## Data, What Data?

.left-column[
  ### Non-Human
  ### Human
]
.right-column[
- clinical data
    - EHRs
    - lab reports
    - medical devices and applications
- consumer devices such as fitbit, Apple Watch
- participant-led research (PLR)
- institution-led research
]

---

## Governance Options

.left-column[
  ### Technical solutions
]
.right-column[
- research to develop solutions to protect what needs to be protected, while sharing what needs to be shared  
- make commonly available, open source tools out of these technical solutions
]

---

## Governance Options

.left-column[
  ### Technical solutions
  ### Consent instruments 
]
.right-column[
- explain to the data giver what they are giving
- what will be done with the data
- who all will have access to their data
- what benefits will accrue to them
- what risks they may face
]

---

## Governance Options

.left-column[
  ### Technical solutions
  ### Consent instruments 
  ### Contractual agreements
]
.right-column[
- bind users of data to conditions of use with penalty on violation
]

---

## Governance Options

.left-column[
  ### Technical solutions
  ### Consent instruments 
  ### Contractual agreements
  ### Reparation mechanism
]
.right-column[
- protection of the citizen from recrimination and discrimination
- financial remedy

[see the work of Barbara Prainsack](https://kclpure.kcl.ac.uk/portal/en/persons/barbara-prainsack(b2ccf7d7-7211-440d-ae13-bdd83f7824b8/publications.html)
]

???

"The first pillar of the solidarity-based approach consists of making data use that is desirable from a public benefit point of view easier. The second pillar of the solidarity-based approach consists of enhancing harm mitigation instruments in cases where people are harmed as a result of their, or other people’s, data being used. The third pillar consists of introducing taxes for data uses that do not meet the criteria of ‘desirable use’"—Barbara Prainsack