Normality and one of the big questions of our age

The Open University's Professor Blaine Price gave his inaugural lecture, Am I Normal, at the OU's Berrill Theatre last night, Tuesday, 28 November.

Recommended watching and listening, it spanned the gamut from the core value of academic collegiality - Blaine repeatedly credited a whole series of named colleagues with the foundations of his successes - to mobile technologies, lifelogging, privacy, health care and what constitutes normality in the data that modern technology generates about us. His answer on the normality spectrum was our normal is unique to us.

Given the rampant, sloganeering, destructive, selfish managerialism wreaking havoc in the academy these days, I was cheered by his attention to the power of collaboration, goodwill, mutual support, respect, recognition and the vocation of working in the public interest.

Amongst the most interesting projects Blaine spoke about were the pioneering pilot studies of joint replacement patients and the monitoring and management of diabetics, through the use of wearable and mobile technologies.

The joint replacement case is a 35 patient study of pre and post operative care and monitoring of pain levels, in association with orthopaedic surgeon, Oliver Pearce, at Milton Keynes hospital.

It's just a pilot study at the moment but the question arises as to how and when to expand such a study to 3,500 or 35,000 or more patients, whilst maintaining respect for and protection of patient confidentiality.

It's a non trivial issue.

There have been a whole series of scandalous examples of mismanagement of patient data in the NHS in the current millennium. Hospital Episode Statistics (HES) processes over 125 million admitted patient, outpatient and accident and emergency records each year. The whole shebang - all patient records since about 1999 - was handed over to a large consultancy firm, PA Consulting, who loaded the data on Google servers outside the UK. The data came on 27 DVDs, took weeks to upload but was easier to play with on Google.  The Blair government's multi billion pound IT disaster, the National Programme for IT in the NHS (NPfIT), is littered with data management blunders.  Cambridge Professor, Ross Anderson, has described the Hospital Episode Statistics data warehouse (which in addition to PA Consulting has been sold to over 1000 economic agents) and the horrendous care.data programme as residing in the 7th circle of hell, as far as lack of respect for medical confidentiality and privacy is concerned. More recently still, the Information Commissioner reprimanded those behind the Royal Free Hospital Trust - Google DeepMind trial which failed to comply with data protection law.

Which all leads us to one of the fundamental questions of our age: should we and if so how do we facilitate the ethical, controlled, secure collection, processing, analysis, sharing, storage, dissemination and use of big data  (such as healthcare data) and the lessons it may have to teach us, in the public interest whilst maintaining/preserving/protecting/enhancing one of the key foundation stones of our humanity and a balanced healthy society, personal and collective privacy?

I'm not sure there are any answers to this, certainly none of the easy variety, though, I again recommend the Nuffield Council on Bioethics report, The collection, linking and use of data in biomedical research and health care:ethical issues. Ross Anderson, who was one of the authors, sums it up neatly:

As the information we gave to our doctors in private to help them treat us is now collected and treated as an industrial raw material, there has been scandal after scandal. From failures of anonymisation through unethical sales to the care.data catastrophe, things just seem to get worse. Where is it all going, and what must a medical data user do to behave ethically? We put forward four principles. First, respect persons; do not treat their confidential data like were coal or bauxite. Second, respect established human-rights and data-protection law, rather than trying to find ways round it. Third, consult people who’ll be affected or who have morally relevant interests. And fourth, tell them what you’ve done – including errors and security breaches.

It's one really helpful collection of principles to bare in mind when thinking about this stuff. But it is just a start and given the rapacious MEGACORP - pick your favorite from Big Tech to Big Pharma to Big Finance & Insurance etc - re-energised corporate feeding frenzy already in play but likely to descend with renewed vigor on the NHS post Brexit, we really should have, long since, been getting our principled legal, ethical, architectural, social, environmental and economic defenses in place.

In the public interest.