August 12, 2021

The Big Data-Opt Out Fandango

What is it?

Data sharing is essential to ensure the best, most up to date, accurate, and evidence-led health and care is possible, from the hospital ward all the way up to the pharmaceutical board. Decisions must be made with, and influenced by, the best possible information.

Data shared from your interactions with your local hospital or GP Practice forms part of a wider initiative across the NHS to give clinicians more time to talk to patients, and require less time asking them the same questions again and again, or worse, relying on poor or incomplete data. This data includes test results, medications you are on, any allergies you have, your diagnosis, symptoms, and also information about your physical, mental, or sexual health.

We share data in many aspects of our personal lives, from supermarket loyalty cards to seemingly innocuous quizzes and polls on social media, so why is the sharing of health data such a febrile ground?

It’s your health; it’s you

In a nutshell, it’s personal. This isn’t just about which brand of dog food you buy (I myself have a fussy dog, half poodle), or who your favourite Pokémon is (toss up for me between Ho-Oh and Electrabuzz) – health data is often very personal, potentially socially stigmatising, and sensitive information beyond physical health alone.

You’d be hard pressed to find someone who disagrees with improving health care through the better use of data, or to address health inequalities; you’d also be hard pressed to find many people who understand how this currently works, and what the safeguards are.

Of the small group of tech, data, and consent experts and specialists who do understand it, many are rightfully concerned about the lack of transparency and public engagement on the subject.

Opt-out consent – an ethical dilemma

When the law for consent around organ donation changed in England in 2020, research showed that the majority of the public supported organ donation. The change in law was to make conversations with the family of a potential organ donor easier to have, to ease the path to organ donation where possible, and to potentially save multiple lives each time.

A public information campaign was run by the NHS Blood and Transplant, to ensure as many people as possible were aware of the law change, and could act accordingly, with the majority of individuals not having to do anything at all.

And this is the crux of the matter, at the heart of the data opt out situation. When you are introducing a system of consent that requires a proactive action to deny consent, to be able to call this consent at all required you to reach out to close to 100% of the population as is reasonably possible.

This hasn’t happened.

Sadly, with the GP data opt-out, there has been no public engagement campaign. Whether you agree with the proposals to share anonymous/pseudonymised data or not, you need to know about it to be able to consent to it – especially if that consent is presumed.

The NHS has a deservedly dear place in the public’s hearts, as imperfect as it is – and following the COVID-19 pandemic, goodwill to those who work for the NHS and the institution is at a high. What the health service cannot afford to do is squander that good will, that trust, by not fully engaging those who use services, and who will understandably be anxious about the use of their personal medical information.

Philosophically, that information doesn’t belong to the clinician, the GP practice, or the wider NHS, it belongs to the individual.

A long tail…

Many of those who are as long in the tooth as I am will remember Care.data, which came in for some severe criticism back in 2013, with much of its trouble based on a lack of public engagement, or willingness to engage.

When this begins to be referred to as a “data grab”, and some of the top results on a google search for “GP data opt out” return “How to opt out” links, you haven’t just lost control of the debate, the debate has left you behind.

So, what can be done?

With neither NHS Digital nor NHS England seemingly able or willing to push forward with plans for wider public engagement, where can we turn to reconcile the benefits to the public of sharing their data, and anxieties about the how and the why?

The next CEO of NHS England was recently announced – Amanda Pritchard – who will be taking up the role as someone with a long background working in the health service, who is widely admired for being a values-based and engaging leader. What an opportunity to address a potentially huge crisis in public confidence in the system, and to draw a line between the previous and new regime.

There is now an open opportunity to engage, with the Parliamentary Under Secretary of State, Jo Churchill, having written to GPs to set out a new approach and timeline for the data opt-out.

What we need is a wide-scale public debate and engagement campaign to address concerns about the use of people’s health data head on. If you ignore public sentiment, if you treat the public as secondary stakeholders in any project, if you underestimate or misunderstand the strength of public feeling, you will end with bigger problems further down the line.

Good communications and PR functions as the check and balance on an organisation, it is the conscience, the little voice in the CEO’s head, telling her what others may not want to, and following through on these principles.

 

Written by Matthew Silk, Senior Account Director, Health Community, Ketchum London