Jeni Tennison Add us as a preferred source on Google

Mastodon @jenit@mastodon.me.uk

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Account age

9 yrs

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But that's a technical point. The real problem I have is with the foundational framing.
There's lip service to improving people's health, but what drives the proposed design and operation is a vision of economic growth from drug trials and the AI-powered healthtech.

14 views But that's a technical point. The real problem I have is with the foundational framing. There's lip service to improving people's health, but what drives the proposed design and operation is a vision of economic growth from drug trials and the AI-powered healthtech.

The NDT proposals paint patient data – and patients, actually – as a commercially exploitable natural resource, a bit like North Sea Oil.
A lack of public trust is seen as getting in the way of government's exploitation of that asset.
Public engagement as risk mitigation.

13 views The NDT proposals paint patient data – and patients, actually – as a commercially exploitable natural resource, a bit like North Sea Oil. A lack of public trust is seen as getting in the way of government's exploitation of that asset. Public engagement as risk mitigation.

Unless you actively try to break the cycle, power in the world leads to power over data and AI, leads to power in the world.
By default, data and AI magnify inequalities and embed monopolies.
There is precisely zero recognition of this in TBI's NDT proposal.

8 views Unless you actively try to break the cycle, power in the world leads to power over data and AI, leads to power in the world. By default, data and AI magnify inequalities and embed monopolies. There is precisely zero recognition of this in TBI's NDT proposal.

I get that the NDT proposal isn't fully worked through, but to miss this fundamental dynamic is naive. Actively accelerating it contradicts how the public talk about public benefit.
For example, look how the OneLondon participants talk about equality and underserved groups:

2 views I get that the NDT proposal isn't fully worked through, but to miss this fundamental dynamic is naive. Actively accelerating it contradicts how the public talk about public benefit. For example, look how the OneLondon participants talk about equality and underserved groups:

📊 Post engagement

📊 Activity & format

Posting cadence

0.12 / week

A lower-frequency account — each post lands with more weight.

Content mix

Mostly text

Recent: 8 text · 4 image · 0 video.

Follower / following

2.1×

Follows 468 back. A more reciprocal / networked account.

Recent posts

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🔥 Top post What if, and hear me out here, the public simply don't agree that commercialising access to sensitive health data is a reasonable thing to do? What happens then? Public engagement without power to make meaningful change over what matters is just participation washing. ★ 57

@Jenite_nn_is@mastodon.social is an imposter masquerading as me. Please do report them. ★ 11 I'll stop here, though there's more to critique in the NDT proposal. Fundamentally, there isn't one big top-down fix for health data access. Read the Goldacre Review instead. Those proposals were much better, broader, and safer. https://ww… ★ 8

I get that the NDT proposal isn't fully worked through, but to miss this fundamental dynamic is naive. Actively accelerating it contradicts how the public talk about public benefit. For example, look how the OneLondon participants talk abo… ★ 2

Unless you actively try to break the cycle, power in the world leads to power over data and AI, leads to power in the world. By default, data and AI magnify inequalities and embed monopolies. There is precisely zero recognition of this in … ★ 8 Where's the recognition that things might go wrong, that companies might lie or exploit loopholes? Where are the mechanisms to quickly catch and respond to problems? To ensure commercial incentives never influence data sharing decisions? T… ★ 4 We should not just care about privacy and transparency, but about equity and accountability. Where are the NDT governance measures that would encourage research on neglected diseases? Or secure economic justice for marginalised communities… ★ 2 (Btw, if the participants in your health data deliberation are not hearing from the likes of @medConfidential, @JustTreatment, @OpenRightsGroup, @publiclawprojct etc then they're not getting a full picture to deliberate over, and neither a… ★ 4 And yes, the public generally supports the use of health data for "public benefit". But that doesn't mean the public supports selling data to pharma/healthtech companies that create new treatments they can then sell back to the NHS at outr… ★ 4 The proposals lean on the results of consultations with the OneLondon Citizen Advisory Group as indicative of public acceptability of commercial exploitation of health data. https://www.onelondon.online/public-recommendations-on-using-heal… ★ 2

The NDT proposals paint patient data – and patients, actually – as a commercially exploitable natural resource, a bit like North Sea Oil. A lack of public trust is seen as getting in the way of government's exploitation of that asset. Publ… ★ 13

But that's a technical point. The real problem I have is with the foundational framing. There's lip service to improving people's health, but what drives the proposed design and operation is a vision of economic growth from drug trials and… ★ 14

🐘 Community & instance

Home server

mastodon.me.uk

Their home server on the fediverse — the instance a creator picks signals the community they belong to.

On Mastodon since

Apr 2017

An OG fediverse account from Mastodon's early years — a long, established presence.

💡 Facts

🗓️Joined Mastodon in 2017 — 9 years ago.

👁️Averages 11 views per post.

📤Posts about 0.1× per week.

🕵️ Fake follower check

Estimated

43/100

Fair Credibility score

73%

Mixed Real audience

Medium Fake-follower risk

High Data confidence

Est. 73% real, active audience · Medium fake-follower risk.
Low engagement (~1.1% of followers engage each post) — a sign of an inflated or inactive audience.
Established account (9+ years old).

Heuristic estimate from engagement, follower ratios, account age & growth — a screening signal, not a guarantee.

About

ED @ConnectedByData, @ShuttleworthFdn fellow, co-chair DGWG @GPAI_PMIA, affiliate @BennettInst, Board @Data4SDGs & @creativecommons, ex @ODIHQ, PhD OBE she/her

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🔀 Audience overlap

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