Sell NHS medical records to fund AI, biotech? Not quite what’s in the Blair-Hague report. (updated)

February 2, 2024 | by

A ‘sale’ not quite what the press reports. The former political rivals of the 1990s and early 2000s, Sir Tony Blair and Lord William Hague, joined forces again last week to release their third report.  “A New National Purpose: Leading the Biotech Revolution”, the third joint report available on Lord Hague’s website, would be to capitalize on what they described as “the fastest and most far-reaching [technological] revolution in the history of human civilisation” to make Britain a world leader in developing “gene therapies, of discovering new antibiotics and of building molecular factories.”

The three major points of the report are:

  1. Formation of a new laboratory, the Laboratory of Biodesign, to focus on the invention of new biotechnology, biomolecules, and therapeutics that are at too early a stage for commercial investors.
  2. Establishment of an NHS Data Trust (NHSDT, pages 33-36),designed for public benefit, with a controlling stake owned by NHS England and additional investments from companies. 
  3. For scaling up biotech, an expansion of the work of the British Business Bank, improved rules for Venture Capital Trusts and consideration of scale-up grants where companies will list in Britain. The recommendations go further into reforms in venture capital funds and capital markets.

#2 is the point making the headlines in the Independent and Sky News. The reports do not explain that the sale of the NHS medical records would be done through the NHSDT.  It would negotiate data-sharing agreements with external organizations and be capable of joining profit-sharing arrangements, while guarding that data would not be sold to third parties and be strictly anonymized. The plain language of the recommendation: “Provide research entities with access to the anonymised data in return for financial profit, which would benefit the NHS. This could happen via a range of mechanisms, varying from direct financial payment to negotiating cost-price access for the NHS to any medicines developed based on the data provided.” (page 35) Profits would be reinvested into the NHS. The analogy is to the for-profit parts of the BBC.

The report goes on to stress producing high-scale companies that stay in the UK, versus the current situation of exporting technology to the US. It also proposes a Biosecurity Task Force “to keep Britain and the rest of the world safe from biotech accidents and bad actors.”

It also addresses how the UK should address a future pandemic as a national security issue (pages 55-58) and restructure the UK Health Security Agency.

In AI, the report recommends the formation of the MediMind laboratory network that would work towards relieving pressure on the NHS through creating personalized AI doctors. This would be done in partnership with industry and the NHS. Last June’s report concentrated on AI.

(Update 2 Feb, Editor’s note: It dismays me again that professional reporters writing for reputable news websites misinterpreted the report as advocating the straight-up sale of NHS medical data. All one had to do was what this poor Yank marketer/writer did–search within the report, past the executive summary, into that section. But ‘selling NHS data’ is more ‘clickbaity’. 

Unfortunately, this Editor believes that these reports will be read, filed, and the same mistakes will be made, putting the UK further behind the proverbial 8-Ball…standard operating procedure.

Open forum below for our UK (and elsewhere) Readers.)

Oracle’s Big Healthcare Transformation: it’s all about ‘better information’ (sigh) (updated)

June 14, 2022 | by

“Better information is the key to transforming healthcare,” he [Larry Ellison] said. “Better information will allow doctors to deliver better patient outcomes. Better information will allow public health officials to develop much better public health policy and it will fundamentally lower healthcare costs overall.”

Larry Ellison’s Big Vision, now that Oracle’s acquired Cerner, has a distinct and familiar ring. ‘Better information’ was also the mantra of IBM Watson Health. It’s the meme of every healthcare company, from education to data analytics, that better and more accessible information means better outcomes and lower cost of care. For those of us who’ve hung our caps in healthcare for the past decade, it’s the dawning promise that like Andrew Wyeth’s Christina’s World, is on the top of the beautiful hill, within our sight, yet out of our reach. But we keep trying.

Mr. Ellison is smarter and richer than most of us, so let’s defer to his Vision and what seem to be the most obvious obstacles to interoperability and mass scaling:

  • A national health record database, in an open standards-based system, will be built by Oracle. It will sit on top and pull information from thousands of hospital and presumably practice-based EHRs. Once completed, in the non-defined future, a hospital or practice anywhere would be able to access patient information.
    • Obstacles: data fragmentation, health records not in an EHR, cooperation in providing information, security, Federal/state privacy regulations, and buy-in from other EHRs which were at last count 500 or so with hospitals running at least 5-10 different EMRs/EHRs.
  • From the national database, disease-specific research using anonymized data from it and AI-enabled analysis
    • This is potentially a big winner, as smaller models are already in use, e.g. between Ronin, a clinical decision support solution, and MD Anderson to create a disease-specific AI model for cancer patients in treatment. 
    • Gathering, anonymizing, and securing the data are the main challenges, plus those above

Big Visions don’t thrill us the way they used to because other than the newest among us, the new Big Promises sound all too familiar. It’s not that long ago that first EHRs, then health information exchanges were supposed to be the clearinghouses to make information interoperable. 21st Century Cures, which allowed members/patients to obtain their health information from payers and providers to the individual, was supposed to fix that portability gap in its next phase. The government also has its own national data exchange framework as part of the Cures Act. So what about that?

Updated. Lest this Editor be considered an outlier, a skeptic, and a general killjoy, there are other smart people far better grounded in IT Reality who are equally skeptical. Patrick Murta, who is now with BehaVR but formerly was co-chief architect for the Office of the National Coordinator for Health IT’s FHIR at Scale Taskforce (FAST), is quoted in FierceHealthcare. “Saying that you’re going to build a national database and bringing that to fruition is a different story. This particular model is going to face the same barriers that have been there for many years and there’s no easy path to overcome those barriers quickly.” His opinion is echoed by at least three others in the article. In short, Oracle is actually behind other vendors in the data interoperability area and the goal to knit together thousands of systems that don’t talk to each other may be admirable, but is likely to be the classic Bridge Too Far.

Tony Blair and his nonprofit Tony Blair Institute for Global Change, already partners with Oracle to use its cloud technology to tackle health issues.

Oracle did not answer queries on timing, cost, and access. 

The cynics among us will need no reminder that Cerner is having interoperability issues between DOD’s MHS Genesis and VA’s Cerner Millenium, both national systems that Oracle has now inherited.

In the short term, Cerner will be updated to include a built-in voice interface, more telehealth capabilities, and disease-specific AI models. It’s nice to have the short-term needs recognized while the Big Vision is being built. Healthcare Dive, FierceHealthcare