Tag Archives: trust

NHS Deepmind and the need for transparency in personal data use

The NHS Deepmind deal has been heavily criticised by the Information Commissioner’s Office (ICO) for serious privacy erosion that fell foul of the Data Protection Act

The deal, which shared NHS patient data of 1.6m people with Google’s AI company Deepmind, had “several shortcomings” including that patients were not adequately informed that their data would be used as part of the tests on an app designed to diagnose serious kidney injury.

Elizabeth Denham, Information Commissioner, said in a statement: “There’s no doubt the huge potential that creative use of data could have on patient care and clinical improvements, but the price of innovation does not need to be the erosion of fundamental privacy rights.

“Our investigation found a number of shortcomings in the way patient records were shared for this trial. Patients would not have reasonably expected their information to have been used in this way, and the Trust could and should have been far more transparent with patients as to what was happening.

“We’ve asked the Trust to commit to making changes that will address those shortcomings, and their co-operation is welcome. The Data Protection Act is not a barrier to innovation, but it does need to be considered wherever people’s data is being used.”

Deepmind has admitted that: “We were almost exclusively focused on building tools that nurses and doctors wanted, and thought of our work as technology for clinicians rather than something that needed to be accountable to and shaped by patients, the public and the NHS as a whole. We got that wrong, and we need to do better.”

There are two fundamental lessons here – and they will be applicable going forward as they are today.

The first is that privacy and innovation can live hand-in-hand. Access to better quality data is a huge boon for innovation across all sectors, but it has to be permissioned and not just handed over. That’s a fundamental human right of the people involved, as well as best practice for ensuring fully accurate data that has the most value. Greater transparency benefits us all.

The second is that users need to be in control of their data, not third parties. This is how situations like this are avoided – by giving individuals control over the data that is about, or created by, them.

In the digi.me world, it then becomes their choice, and theirs alone, what happens to that data. And that’s exactly as it should be.

Only trust can set data free – but with power comes responsibility

Trust is key to living life online – but the actions of some threaten the peace and security of the rest of us.

In the same week a survey of US web users found that almost half of households had a user who had been deterred from shopping or banking online, or posting on social media, because of the “chilling” effect of privacy concerns, researchers thought it was ok to release the personal data of 70K OKCupid users, including details about sexual desire and drug use.

The researchers claimed that the data was already public, as technically anyone on the site could access it on individual profiles, but they have been criticised for releasing it in bulk without any attempt at anonymisation or, much more pertinently, getting the consent of the users concerned.

The biggest concern today stopping users from sharing more personal data is the lack of control over what happens to it once the initial purpose is complete.

The new GDPR legislation becoming law in 2018 will give a huge boost to personal privacy concerns in this area, only allowing information to be used for the requested action and not re-used or sold on, as well as the right to the withdrawal of consent at a later date.

But the truth is that current unscrupulous methods, from the researchers mentioned above, to ad tracking firms which scrape our data without consent and then follow us around the web, are harming innovation and openness from which we could all benefit, in pretty much every area of our lives.

Open data is a great and wonderful thing – bigger datasets fuel quicker scientific progress, the planning of new services and products to meet genuine needs and, within companies, deeper and better relationships with consumers.

Data that all can see, draw on and use for the greater good can help write wrongs and generally formulate a better world.

Many minds make great work – and the more data they have to do that with, the merrier.

Health, in particular, is ripe for data-centered innovation, which could help predict and prevent illness based on patterns in other patients with similar lifestyles or symptoms, or even speed up cures by providing more data for greater numbers and frequencies of studies and trials.

But there is – understandably – an unwillingness to share this most personal information when scares over cyber attacks and a general feeling of lack of control is rife. Not to mention the fact that companies benefit from the value associated with our data but we, all to often, do not.

So the onus is on those working responsibly with data – such as digi.me, which never sees, touches or holds your personal information – to firstly be clear about this, and secondly work with legislation and like minds to make trust in personal data strong again.

The sharing of data benefits everyone from individual users to companies to scientists – but those of us doing it right lose out while there are still shady practices making the headlines.

And this is why it is imperative to find a new way, returning personal data to the control of the individual and changing the very basis and structure of online advertising so that it doesn’t take our data without our consent.

The data-driven innovations we seek and know are ripe for explosion will still happen – but they’ll happen sooner if a broken system can be re-energised and trust restored.

And so those of us who are the keepers of the trust flame need to shout long and hard until everyone moves to the beat of our drum.


The Internet of Me: something we can (and do) all agree on

Unity on identifying key emerging IT trends is something of a rarity, but everyone is singing from the ‘People First’ hymnsheet at the moment – and we’re at the very forefront of the revolution with our Internet of Me forum.

We’ll get to the who in a minute, but the obvious question is why, right? The start of a year often heralds reflection on the months past, and the chance to refine a company vision or personal perspective for the year ahead, but this is so widespread, so pervasive, that it feels overwhelmingly like a change in progress rather than an ideological wistfulness that will achieve nothing but some personal angst among the industry high ranks before moving on, never to be touched on again.

This, a converging of influential people and organisations saying that people need to come first and be the guiding lights and influence on growth and innovation rather than the other way around, is the start of a new normal, a chance to right the wrongs of the past and build a better, more connected future for all, with every one of us at the centre of, and in control of, our own digital lives.

It’s hard to put it better than Paul Daugherty, chief technology officer at Accenture, who said of their newly-launched Technology Vision for 2016, which this year promotes the importance of people over technology development: “Our Tech Vision theme of People First is really resonating – it’s touched on a raw nerve that many leaders have been feeling for a while now.  In short, their investments in technology have outpaced their investment in people – and it’s time to mind that gap.”

One of the five pillars of their annual respected Vision report, which seeks to pinpoint the emerging IT developments that will have the greatest impact on companies, government agencies, and other organisations in the next three to five years, is one for which Paul’s shorthand formula is Digital Trust = Digital Ethics + Cyber Security.

In other words, trust is crucial at many levels, both in new technologies, the businesses that want to share or use data, and those such as digi.me, which has a deeper and more personal focus to enable others to do this, unlocking the power of personal information for each and every user.  As he points out: “That’s why organizations need a new focus on cultivating trust among customers, employees, and partners – and this will differentiate those who get it right.”

Here at digi.me, trust in us and our product is crucial to our business vision – and we know we’re getting it right. We’ve been banging the Internet of Me drum for a while now, sponsoring and supporting an independent forum on what we firmly believe is a technological revolution that will transform the personal data economy (catch up with the most recent articles, including an interview with the legendary Doc Searls, here) for our business as well as many, many others. But the beauty of the movement is that we are far from alone. In fact, when it comes to trust and the need to return power over data to the person who made it in order to build it deeper and sooner for the benefit of all, we’re singing to the choir.

Here are just a selection of comments influential people in the tech world have made on the Internet of Me theme, which puts the user at the heart of their own connected world, in just the last few weeks:

Tim Cook, Apple CEO: “Over the arc of time, customers will move to people they trust with their data.”

Marissa Mayer, Yahoo CEO: “We need to afford the individual control. Users need to own their data, which they can examine, take it with them to other sites and vendors…”

Edith Ramirez, FTC head: “Consumers are going to be slow to take up these products if issues of privacy and security are of a concern.”

Marc Benioff, Salesforce CEO: “Trust is a serious problem. The reality is that we all have to step up and get to another level of transparency and openness…The digital revolution needs a trust revolution.”

And it’s so obvious, so beautifully clear, that it barely needs explaining. But in short – the days of businesses telling users what they need and how they can have it are in their dying days. And rising in time with that is a new power to the people, that gives each and every one of us a new and potent choice – the right to choose who sees and who we trust with our data, whatever form that may take.