The NHS changes greatly over time, but there are few “big bang” changes overnight, that happen without involving the patient. Your health context can change in the course of a single consultation, but the system does not change – only how you interact with it. Press releases may suggest that the NHS is rushing towards genomics and AI, but it’s much more a slow stroll.

The publication of Caldicott 3 called for an “informed” “continuing conversation” about health data. We agree – the best way for a patient to understand how their data may be used next month, is to be able to see how it was used last month. But if there are caveats that remain hidden from the public, a dishonest entry is worse than no entry.

Every patient has a personal lived experience of the NHS, and using that as the starting point for accountability of data use is vital. Data usage reports can give a patient the information about how data is used, in a context that directly relates to their personal experience of the NHS. Some of that they were involved in, and some of it is the system doing its thing and hoping no one notices.

Databases: poor and past?

Why are some patients being told to bring their passport to receive care, even though the NHS was there when they were born?

Databases that have benefits will receive public support for doing what they were supposed to do, but there is a widespread recognition that some past data choices by the NHS may have not been wise.

Whether that legacy will be repaired, or left to fester, is now up to the Department of Health, when they respond to the Caldicott Review. The Review left a number of hard questions unanswered, including the abuse of some patients that has been described as tantamount to “blackmail”. Care.data was just one of those. There are others that have hidden under a rock for some time, and followed care.data as it it were a guidebook.

The databases proliferate, there is almost no evidence for whether they are useful. Is the energy spent on them worthwhile? Is there a better way of delivering the goals they were designed to meet? There is an opportunity cost to doing anything…

There are many good reasons to use data, but just because a data collection has existed for decades, doesn’t mean it’s still the best way to deliver on the goals. Continued secrecy about the effectiveness of some data projects suggests that perhaps the claims of benefits are overblown, and are not supported by the evidence of what actually happened.

A continuing conversations requires ongoing evidence of reality, not political hyperbole.

Will patients be shown the benefits?

Will patients be provided with the evidence to show how their wishes have been implemented? What was the outcome of projects where their data was included?

What was the outcome of the “necessary” projects where dissent was ignored?

Will the Caldicott Consent Choice ignore the choices patients were previously offered?

In 2016, NHS Digital have made the final preparatory steps to telling patients how their data is used, which was firstly, keeping track (a side effect of beginning to honor objections), but they also now publish a detailed data release register – with sufficient detail for you to work out where some of your data went and why. Such a register allows for independent scrutiny of any data flow, and is a necessary prerequisite to a data usage report.

It does not tell an individual whether their data was used, nor what the knowledge generated was (e.g. see notices tab), but it is the key step. And while two thirds of data sold by NHS Digital does not honour your opt out, Public Health England sneak a copy of NHS data, refuse to honour objections, and hide those actions from their data release register. (As of December 2016, some administrators pretend that there was no opt out offered from “anonymised” hospital data… here’s the video from Parliament).

Digital, Deepmind, and beyond

How AI will support care is a choice for the future, but if there is going to be any move towards that world (and there already is), the transparency of all digital services must be fundamentally, inviolable, and clear — it can include AI, but can’t include dodgy caveats.

If there is any secrecy about how patient data is used, NHS institutions may hope to be given the benefit of the doubt for secrecy, Google not so much. If there is secrecy for the NHS organisations, companies will try and sneak in too.

Similarly, if patients are to be offered digital services that they can use without fear, there must be an accountability mechanism for when those services were accessed, that they can view when they wish. Otherwise, the lowest form of digital predators will descend on health services like it’s feeding time. It doesn’t have to happen – unless there is a political decision that mistakes can be covered up.

When companies put out a press release, we often get called for comment and insight  on what is actually going on. That’s a journalist’s job, and ours, because some good intentions come with too high a price.

Will the mistakes of the past begin to be rectified, creating the consensual, safe, and transparent basis for the (digital) health service of the future?

Demonstrations of Delivery on promises

There will always be a demand to do more with data – but any framework has to respect that some things will not be permitted.

As Caldicott 3 recognised, telling patients how their data has been used is necessary for public confidence in the handling of data. If there is to be confidence in the system, and allowing data to be used to its full potential, then there should be a recognition that when that use is objected to by an individual, then that objection is respected.

We focus on health data, but this applies across the public sector, where there is a desire to make data great again in 2017…

Our 3 page briefing is here.

Summary

Given the obstinacy of the Cabinet Office, Part 5 of this Bill has been offered on a take or leave it basis to Parliament.  If it is not improved at Committee stage, we suggest you leave it.

A major hospital in London has a deal with Google to produce an app to tell doctors which patients are in the most urgent need. This is a good thing. But to produce it, Google insisted on having a copy of main dataset covering every patient in the hospital, which is only available up until the end of the previous calendar month.  The appropriate way to get the information needed, was to get up to the minute information on the patient whose details they were going to display. However, Google wanted all the data, and insisted on it if the hospital wanted to work with them.

It’s not the creation or production of a pretty app that’s the problem – it’s the demand for excessive data in return for using the app. It’s entirely rational for the hospital to accept the app as it may lead to marginally better care for their patients; but the price is being paid in their patients’ data. The Bill applies this principle across Government: third parties want the benefits of having the data, because this Bill does not require any protections.

The Minister was asked a simple question about safeguards: “Could you explain where they are and what they look like?” and no answer – because there are none.

Characterising Chapters 1 and 2, it can be said they “will have the effect of removing all barriers to data-sharing between two or more persons, where the sharing concerns at least in part the sharing of personal data, where such sharing is necessary to achieve a policy objective…”

Unfortunately for the Government, that characterisation is quoting from the Government’s explanatory notes for s152 of the Coroners and Justice Bill (para 962). Nothing has changed in Government thinking since 2009, when the House of Lords threw out that clause.

Our 3 page explanatory briefing is here.

The Codes of Practice for the Digital Economy Bill aren’t worth the paper they’re (not) printed on. They aren’t legally binding (para 11), and are effectively subservient to the ICO’s existing code, even while paragraph 60 pretends a single side of A4 is a valid Privacy Impact Assessment for data sharing for operational purposes.

As this is the case, why is there a code of practice necessary under the legislation? Is does nothing new. Is it solely to make it look more respectable than the dark and dank dodgy deal that it actually is?

In places such as supermarkets, you have a choice of whether to use a clubcard, and can easily use one of the other supermarkets that are available – Government doesn’t have competition promoting integrity. To ensure a citizen can see how Government uses data about them, there should be a statutory register of data sharing agreements (involving public sector data). A register prevents nothing (which seems to be the policy intent of the Bill), but is simply a list of stated intents. From the Register comes an informed discussion of what organisations are actually doing and sharing, rather than excessive secrecy and double dealing.

Opposition to a register comes from fear, based in Government’s lack of knowledge of what data they have, or currently share it. If you don’t have a clue where your data is, or why it’s there, you oppose a register because you don’t want to find out.

How this state of affairs came about, is at the heart of this Bill.

We’ve previously posted about the definition of Personal Data in the Investigatory Powers Bill. What about in the non-secret parts of Government?

In 2010, the Cabinet Office told GCHQ that “to be considered personal data, a dataset has to contain at least the actual names of individuals.” GCHQ being subject to the national security exceptions of the Data Protection Act.

In March 2015, the term “bulk personal datasets” was used by Parliament, and entered common terminology, but it wasn’t until November 2015 that the full definition of the Data Protection Act was restored (with DPA exceptions for National Security).

But, in the middle 7 months, the term gained increased currency within Government and used much more widely as it crossed into the non-secret sphere. The Cabinet Office took the existing meaning and thinking and applied it elsewhere.

It was never noted that the definitions in the non-secret parts of Government should have been  different, likely weren’t, and hence possibly are invalid under DPA, because the narrow term for GCHQ was classified, and hence restricted. Ie “actual names” is not the DPA standard.

So what effect did this have?

Following the talk talk hacks, Government ran an exercise described as the “Cabinet Office audit 2016” looking at what each Department held, and the impact of them losing it.

We made FoI requests about what each department held, and got very interesting answers (we excluded national security or serious crime).

The Cabinet Office hold no bulk personal data (apparently… ).

DCMS hold some bulk personal datasets – on people who have responded to their consultations (and some data from the Olympics)…  (erm…  what?)

The Department of Transport gave a much longer answer, (but didn’t know how much was in each dataset).

Does the Government known what personal data it has, uses and shares, and where it keeps it? If so, did Departments share that list with the Cabinet when asked?

Since we can see they probably didn’t, are all uses of large datasets (whether they are considered personal data or otherwise) fully compliant with the definitions in the Data Protection Act?

How does the Bill and associated work help resolve this mess? 

We have now published our submission on Part 5 of the Digital Economy Bill to the Committee scrutinising the Bill.

The Digital Economy Bill (Part 5) promotes a fertile breeding ground for fraud and misery: excessive data sharing, but only in secret.

The protections on sharing data to academic researchers are strict – people who work to increase human knowledge have to jump through a range of hoops to get funded, with critique and transparency; and then even more hoops to get data, again with critique and transparence; and even then, the the Digital Economy Bill does not apply that process to health data for research until we see the outcome to the Caldicott process.

Yet, the Digital Economy Bill contains no prohibition on civil servants secretly sharing any data, including medical records. This includes secret sharing by Government Departments to inform operational decisions. There are no meaningful restrictions on copying of any data held by any public body. From anywhere, to anywhere except independent experts.

In recent weeks, it has emerged that a citizen was stripped of housing benefits because data showed they were cohabiting with “Joseph Rowntree”, the 19th Century philanthropist whose modern legacy includes a Housing Trust which bears his name, and which was that woman’s social landlord. The DWP contractors used just enough data to create “evidence” that reinforced their prejudice, but not enough to realise their “evidence” was lunacy. This Bill makes those events more common, more harmful, and more opaque.

The Cabinet Office believe that they should be trusted with everything, and independent academics can be trusted with almost nothing. Neither of those are likely to be right.

That is learning the wrong lesson from care.data. Academic use of data to improve the public knowledge was not what people objected to. It was the secrecy and other purposes.

The Cabinet Office clearly don’t understand that their approach is part of the problem. More copying with the same rules was care.data; this bill is more copying with less rules, less transparency, and less oversight. No one suggests that fraud prevention should be subject to consent, but Parliament should be able to assess whether the approach has worked.

The existing minimal oversight of Parliament goes away, and Departments can do what they wish. A statutory basis for disclosure to prevent fraud is entirely sensible – individuals shouldn’t get that choice – but in addition to all sharing the data, the Government demands secrecy as to whether that sharing was effective.

If governance is effective, then it should apply to all. If it’s ineffective, then it shouldn’t happen at all. Parliament needs to pick one.

The reason the last Government didn’t want good governance and accountability to apply to Government, is because the governance and accountability process works.

An accountability process that is entirely absent from most parts of this Bill.

Which way is the new Government going to go?