Will the rise of technology mean the fall of privacy–and what can be done? UK seeks a new National Data Guardian.

Can we have data sharing and interoperability while retaining control by individuals on what they want shared? This keeps surfacing as a concern in the US, UK, Europe, and Australia, especially with COVID testing.

In recent news, last week’s acquisition of Ancestry by Blackstone [TTA 13 August] raised questions in minds other than this Editor’s of how a business model based on the value of genomic data to others is going to serve two masters–investors and its customers who simply want to know their genetic profile and disease predispositions, and may not be clear about or confused about how to limit where their data is going, however de-identified. The consolidation of digital health companies, practices, and payers–Teladoc and Livongo, CVS Health and Aetna, and even Village MD and Walgreens–are also dependent on data. Terms you hear are ‘tracking the patient journey’, ‘improving population health’, and a Big ’80s term, ‘synergy’. This does not include all the platforms that are solely about the data and making it more available in the healthcare universe.

A recent HIMSS virtual session, reported in Healthcare Finance, addressed the issue in a soft and jargony way which is easy to dismiss. From one of the five panelists:  

Dr. Alex Cahana, chief medical officer at ConsenSys Health.”And so if we are in essence our data, then any third party that takes that data – with a partial or even complete agreement of consent from my end, and uses it, abuses it or loses it – takes actually a piece of me as a human.”

Dignity-Preserving Technology: Addressing Global Health Disparities in Vulnerable Populations

But then when you dig into it and the further comments, it’s absolutely true. Most data sharing, most of the time, is helpful. Not having to keep track of everything on paper, or being able to store your data digitally, or your primary care practice or radiologist having it and interpretation accessible, makes life easier. The average person tends to block the possibility of misuse, except if it turns around and bites us. So what is the solution? Quite a bit of this discussion was about improving “literacy” which is a Catch-22 of vulnerability– ‘lacking skill and ability’ to understand how their data is being used versus ‘the system’ actually creating these vulnerable populations. But when the priority, from the government on to private payers, is ‘value-based care’ and saving money, how does this prevent ‘nefarious use’ of sharing data and identifying de-identified data for which you, the vulnerable, have given consent, to that end? 

It’s exhausting. Why avoid the problem in the first place? Having observed the uses and misuses of genomics data, this Editor will harp on again that we should have a Genomic Data Bill of Rights [TTA 29 Aug 18] for consumers to be fully transparent on where their data is going, how it is being used, and to easily keep their data private without jumping through a ridiculous number of hoops. This could be expandable to all health data. While I’d prefer this to be enforced by private entities, I don’t see it having a chance. In the US, we have HIPAA which is enforced by HHS’ Office of Civil Rights (OCR), which also watchdogs and fines for internal data breaches. Data privacy is also a problem of international scope, what with data hacking coming from state-sponsored entities in China and North Korea, as well as Eastern European pirates.

Thus it is encouraging that the UK’s Department of Health and Social Care is seeking a new national data guardian (NDG) to figure out how to safeguard patient data, based on the December 2018 Act. This replaces Dame Fiona Caldicott who was the first NDG starting in 2014 well before the Act. The specs for the job in Public Appointments are here. You’ll be paid £45,000 per annum, for a 2-3 day per week, primarily working remote with some travel to Leeds and London. (But if you’d like it, apply quickly–it closes 3 Sept!). It’s not full time, which is slightly dismaying given the situation’s growing importance. The HealthcareITNews article has a HIMSS interview video with Dame Fiona discussing the role of trust in this process starting with the clinician, and why the Care.data program was scrapped. Of related interest is Public Health England’s inter-mortem of lessons learned in data management from COVID-19, while reportedly Secretary Matt Hancock is replacing it with a new agency with a sole focus on health protection from pandemics. Hmmmmm…..HealthcareITNews.

Will Matt Hancock be a refreshing change for NHS? Or another promise unfulfilled? (updated)

[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2018/07/matt-in-a-binder.jpg” thumb_width=”200″ /]Matt In A Binder? With the sudden departure of Jeremy Hunt from the Department of Health and Social Care in the Cabinet’s ‘change partners and dance’, the new Secretary of State Matt Hancock comes over from heading Digital, Culture, Media and Sport. A couple of weeks in, it can be determined that he is a big advocate of technology and looking forward, not back (which Mr. Hunt spent a great deal of time doing):

Technology has a proven ability to radically change the world for the better – be it in finance, in education and in transport. But nowhere does technology have greater potential to improve lives than in healthcare. (Statement on Gov.UK/Health Service Journal 12 July )

And he glows again about increasing the use of apps within the NHS, though Digital Health goes a little overboard in calling the Rt Hon Mr. Hancock ‘app-happy’ even though he’s built his own this year so that his West Suffolk constituents can keep track of his activities. 

In his maiden speech, Mr. Hancock promoted a drive to replace pagers with smartphone apps as part of a £487 million funding package and connecting Amazon Echo with the NHS Choices website. It was overshadowed by a seeming walking back of the 95 percent four-hour A&E treatment target. Telegraph

Much of the criticism comes from those who see his appointment as yet another step in the privatization and regional devolution of the NHS due to campaign donations from the chair of pro-market group the Institute of Economic Affairs (IEA). However, Mr. Hunt faced the realization that NHS trusts are $1.2bn in debt and sought workarounds such as adoption of an ACO-type model (which in the US has a strong element of public incentive) and increased use of private health insurance to cost-shift. He wasn’t a technophobe, having inked a deal with the UK Space Agency to repurpose space tech for health tech and funding innovators in this conversion up to £4 million–which can be said to be ‘out there’.

Mr. Hancock also announced this week the £37.5 million funding of three and five ‘Digital Innovation Hubs’ over the next three years. These will connect regional healthcare data with genetic and biomedical information for R&D purposes.

Will he last? Will there be positive changed fueled by technology? Will the May Government last? Only time will tell.

What are your thoughts? (If you’d like to post anonymously, write Editor Donna in confidence)

Here’s select opinion from across the spectrum:

Don’t be fooled, Matt Hancock will be no better for the NHS than Jeremy Hunt was (The Independent)

New health secretary Matt Hancock received £32,000 in donations from chair of think tank that wants NHS ‘abolished’ (The Independent)

Roy Lilley’s always tart take on things NHS extends to the new Secretary dubbed ‘No18’. A deft wielding of Occam’s Razor and a saber on reflexive phraseology such as ‘driving culture change’ (it can be cultivated not driven–this Editor agrees but the tone and structure need to be set from the top), dealing with suppliers, and the danger of creating an electronic Tower of Babel due to lack of interoperability. (Does this resonate in the US? You bet!) (See NHSManagers.net if the link does not work.)

Margaret McCartney: Health technology and the modern inverse care law (BMJ) — to paraphrase, that the greatest need for healthcare is by those least likely to have the right care at the right time available. She points to Babylon Health, which counts Mr. Hancock as a member, as not only unproven, but also not needed by those able to afford other options. (But didn’t we know that already?)