Not Much Deep Thinking Evident Behind NHS Trust’s Data Share with Google DeepMind

Not for the first time, the NHS has come under fire from patients, patient groups and the scrutiny of the UK’s National Data Guardian (NDG), Dame Fiona Caldicott – and the ICO’s chief Elizabeth Denham.

The Royal Free Hospital in London commissioned Google’s DeepMind division in 2015 to help develop a Streams app to detect acute kidney injury through a blood test to identify deterioration. They provided DeepMind with 1.6 million patient records in the process to enabling ‘real time’ testing.

• Patients at the Royal Free Hospital in London were mainly unaware that their details were being used by a third party, nor how it was being used.
• No details on the financial terms of the deal have been disclosed publicly.

To Dame Fiona Caldicott, whose letter to the Royal Free was recently leaked, laid out her  concern that the data had been transferred on a ‘legally inappropriate’ (read ‘unlawful’) basis.  The app being developed was not ‘central’ to patient clinical care.  Caldicott shared her concerns with the ICO.

Caldicott does not dispute the app’s ability to help clinicians save lives today, but added in her letter: “Given that Streams was going through testing and therefore could not be relied upon for patient care, any role the application may have played in supporting the provision of direct care would have been limited and secondary to the purpose of the data transfer.  My considered opinion therefore remains that it would not have been within this reasonable expectation of patients that their records would have been shared for this purpose.”

Google DeepMind’s clinical lead Dominic King, was swift to distance any cross-use of the patient data with other Google products or services, or use for commercial purposes.

The ICO’s Elizabeth Denham has yet to give her judgement on misuse under the Data Protection Act, but the issue underlines the importance of individual consent.  This will be evermore intensely examined with the forthcoming GDPR regulations in 2018.  As it stands though, the ICO nonetheless has powers to fine a company up to £500,000 for the misuse of personal data as well as seek individual criminal prosecution.

Irrespective of the worthiness and potential benefit to patients in the longer term from the app, Dominic King agrees: “I think one thing that we do recognise that we could have done better is make sure that the public are really informed about how their data is used.”

It may prove a costly oversight to the Royal Free at a time of increasing NHS budget constraints, as well as prompting an ignominious slap in the face to the Trust from its patient body through damage reputation.

Amicus ITS is continuing its series of thought leadership events, this time on GDPR through 2017 for its customers and invited guests.  Further information on the programme can be found by contact Marketing (email) or calling Lindsay Burden on 02380 429475.

3D printing gets smarter in healthcare

Since we last reported an amazing 3D printing story in January 2015, the technology continues to demonstrate its extraordinary enabling powers in the operating theatre for the NHS, with another life transformed as reported this week.

Surgeons were able to use 3D printers to replicate body parts in a kidney transplant from father to daughter at Guy’s and St Thomas’ NHS Foundation Trust in London recently.  With the contrast in size of the organs, 3D printers were used to make models of the daughter’s abdomen and father’s kidney from CT and MRI scans. This enabled the surgeons to accurately plan and rehearse the complex operation.

Hard printouts created the girl’s pelvis, whilst her liver was made softer in a liquid plastic model to enable the doctors to practice pushing it out of the way to make way for the new kidney. Happily, the little girl can now run around and eat normally and enjoy a very different outcome and normal childhood, whilst her parents have the simple joy of planning for her nursery integration in the Autumn.

Unlike in medical robotics where there have been more than two million operations since 2000 the robotics arena still carries challenges in winning over patient confidence.  Here however, the winning smiles of father and daughter amply reflect the achievement of partnership between the human hand and advanced printing technology that shows there is plenty more in store in the future of 3D printing.

first-kidney-transplant-3dprinting-changes-life-northern-ireland-toddler-lucy-1

How on target is the NHS to going paperless in 2018?

Health Secretary Jeremy Hunt has been seeking a paperless records target of 2018 for the NHS since 2013.   In a recent focused healthcare survey of 67 members of the Health CIO Network and CCIO Leaders Network of clinicians and digital health IT leaders, there remains a mixed response:

•  67% stated they were ‘quite confident’ or ‘extremely confident’ their organisation will be paper-light by 2020.
•  14% stated they are ‘not at all confident’ or ‘not very confident’ of achieving the target.

However, on the question of having “integrated health and care records, enabling effective co-ordination of health and social care, by 2020” there was less certainty:

•  56% said they were ‘extremely confident’ or ‘quite confident’ of achieving this, but a quarter (24%), said they were ‘not at all confident’ or ‘not very confident’.
•  28% said they were confident of giving patients read/write access to their records, while 53% said they were not confident.

The top priorities for most of those involved focused on:

  • moving to paperless working – 73%
  • improving quality of services – 68%
  • supporting new models of care – 67%

When asked about their next major IT project, these were reported as:

1.  Top ranking for personal health records and patient portals, to give patients access to their medical record and test results, plus services such as appointment booking and email consultations.
2.  Next were shared record initiatives
3.  Third were e-prescribing and medicines management.
4.  In fourth place finally, one-third of respondents said Electronic Patient Records (EPR) – suggesting many are perhaps already some way down the line with this already?

Not surprisingly, with all the other cutbacks facing the NHS, this drive to go paperless might have a lot of goodwill in the sector to deliver, but the barriers facing NHS providers can be summarised by two principle points of feedback:

  • lack of adequate resource (73% affirmed that their IT budget was insufficient)
  • lack of staffing resource

With the breakup of the NHS from a truly national health service to a regional health service, primary and secondary healthcare organisations around the country will need to start showing they are making this work and that we are benefitting.  Then, we may wonder why it took so long when other major data institutions such as banks and industries such as insurance groups have managed to do this.  After all a 100-1 shot just won the Melbourne Cup.

NHS

Joined up healthcare technology putting patients at the heart of consultations

With the advent of wearable technology and health trackers, along with social media and the power of Google, many patients are turning to personal investigation to check out their personal health symptons and conditions online using Google, Bing, Yahoo and others.  This marks the evolution of the e-patient.

US cancer sufferer and blogger Dave de Bronkart whose moniker is ‘e-patient Dave’, originally rose to prominence in 2009 and recently spoke at the Intersystems joined-up healthcare event in the US to advocate greater openness in the worldwide healthcare community between patient and the doctor as the patient seeks to know more.

Patients are able to access their digital health records (though relatively few do – 0.4% of GP patients thus far in the UK) and by doing so are best placed to identify any errors in separately held records across service providers and regions.  With access to online services, cost savings for booking appointments online, obtaining referrals, and even doctors using wifi to track patient flow through a hospital, this creates massive savings for primary care providers and hospital trusts.

The mainly holistic but equally powerful change however comes through the doctor being open to suggestion from the patient during consultations, as a result of today’s vast wealth of data available online. This offers patients access to research resources which can supplement practioner’s knowledge as well as reinforce or challenge, which should not be written off.  As e-patient Dave argues, this should bring doctor and patient closer together but could be seen by some GPs as a threat. The patient should be welcomed in bringing their own healthcare research and knowledge to the table.  By being open to this he argues, it increases interaction and creates a more educated dialogue, involving better informed questions and greater degree of insight whether a good or bad prognosis. This ultimately provides the opportunity for perceived delivery of a greater level of personal care through proper and open consultation.

These are concepts advocated by UK health minister Jeremy Hunt, who as the NHS seeks to go paperless by 2018, has tasked Martha Lane Fox with putting together a proposal on increasing the uptake of digital innovation in the NHS.  This will no doubt include proposals to involve greater use of social media or webex consultations, other than the existing social media use of just inviting views or questions by the healthcare organisations which a number have already undertaken.  With the higher motive of saving billions of pounds, there is nonetheless an argument that greater empowerment and enablement will assist trusts as they seek to save money bluntly through technology on the one hand and enable the patient to be more involved in their own care and outcomes.  Just keep a weather eye on the critical issue of the handling of patient data and privacy as this direction evolves.

ePatient-Strategien_1900x800    Dave-deBronkart

Telehealth top priority in Kent

Kent has the largest growing elderly population in the country. With this in mind, Kent County Council have announced that telehealth is a top priority for the region to provide digital health solutions. Kent has the benefit of a cluster of technology start-ups in the region. These are being actively supported with business loans. The focus of these new digital companies include providing secure solutions for sharing patient data with practitioners. If they succeed as hoped, they could be creating a new wave of innovative, preventative solutions, which could avoid an over reliance on residential care homes and use of geriatric wards in future. It would also save the Council purse and NHS serious money in the long run if they get the combination right.

Can selling patient data be defended and protected?

NHS England plans to create a single database of medical data from hospitals and GPs. This has created commercial and security concerns amongst the public and privacy groups. Drug and insurance companies will be able to buy the information later this year and the NHS has not had much luck managing data security in recent years. Privacy group concerns counter the “pseudonymised” records promise of NHS England, arguing that cross referencing by insurers, pharmaceutical groups and other health sector groups will enable identification of individuals from their own medical data. This is supported by a Netherlands study which showed that the unique combination of DOB, gender and a partial postcode enabled unambiguous identification. There are opt out forms from GPs but that does not cover records held at different hospitals or GPs if practice changed. It is a massively sensitive big data project, so the security framework will need to be truly robust to avoid continuing privacy and data protection legal risk.