Digital Citizen Interaction with Health Care?

Digital Citizen Interaction with Health Care?

I have been involved with healthcare-related research for over a decade, and our main current focus is around digital identity (through the Blockpass ID Lab) and citizen-focused information sharing. In fact, one of our spin-outs (Symphonic) grew from our roots in information sharing related to health care, and who created such great software and methods that they were fully acquired by Ping Identity in 2020.

At the time of the core research work around Symphonic, we were up against Connecting for Health, and which had a budget measured in billions (and which came to nothing). One thing that happened with Symphonic, though, is that they eventually moved out of health care and applied their methods to other industry sectors. Unfortunately, health care can be a highly resistant to change, especially when it affects a change of working practice, and also involves changing paper-based approaches to digital-ones.

And, so, after a decade, I would say that my digital integration with the NHS is not much better than it was 10 years ago. I have been to so many conferences which have promised action on “citizen-focused health care”, and have seen little progress. For example, a few months ago, I filled in a piece of paper with a pen and passed it to my new GP surgery. Actually, it was the second time in a year that I transferred, and each time it was a trusty pen and paper that I used to register all the details that the NHS should already know about me. I still wait for something to happen on the transfer, and have no idea where my piece of paper has gone.

In terms of digital integration, my dentist knows me better and is much more proactive in interacting with me. And I think about all the areas of my digital life — I managed to get a new passport in a few days, and a new driver's licence in less than a week. I can easily pay my taxes online, and where I get reminders on forthcoming events. But, for my health care, I still need to fill in a piece of paper, and hope that it will get somewhere where someone will process it, and might that they might tell me something about where the piece of paper has gone. It’s not just 10 years old, it is 1980s technology. And, remember, proper digitization is not converting a paper form into an on-line version. That is just the first step.

The NHS has generally failed to properly integrating the citizen in a meaningful digital way, as it has lacked real leadership in creating an architecture for the citizen. The minute you put anything out to tender with a scorecard that cares more about cost than innovation, you have lost any real opportunity for change.

There’s no vision, no blueprint, no Estonian X-Road, no Finnish engagement plan, and no debate or critical analysis. Without any real digital identity system, we build on sand. I know the NHS does amazing work and has great people, but it has almost completely let the drive to digitize its engagement with citizens pass it by. In fact, the only useful letters I get in the post these days, relate to the NHS or my local council. And, I have heard all the arguments for continuing with a paper-based approach, but why does it take months to transfer from one GP to another (and with no interaction or confirmation as it progresses)?

But, you will say, we didn’t really have a chance to change? Well, over £10 billion was invested a few decades ago (Connecting For Health), and we ended up with zero. But, that was in the days of mainframes, and clunky software. These days we have Cloud-based systems, and could surely create a proper digital platform for every citizen (with the option for a paper-based system, too).

The NHS in Scotland actually had a great opportunity in building the future with Sitekit’s e-Red Book, and where every child would have an electronic record — and which would be owned by the parents. It was one of the most innovative and transformative things I have ever seen in my time as an academic. The business and health case was so easy … take a physical thing that was generally loved by those who used it (the paper Red Book) and convert it into a digital form. The first prototypes were always going to be difficult, but all part of the learning process. But, it was rejected, as there was a plan to roll out another NHS-created citizen-focused system at the time, but, of course, nothing ever came from that. And, this wasn’t Google pushing this technology — it was an innovate company on the Isle of Skye. Luckily, Sitekit has thrived, because other places in the UK had faith in their vision.

The e-Red Book would, at least, have provided a wave of integration that would have advanced every year. Eventually, after a few years, we would have had a proper citizen-focused healthcare record system, and where children become adults and have their records moved on. Think of all the data we have lost from not doing this. For now, I have to tick my vaccinations on a piece of paper. But, with the e-Red Book, we could now have proper data for our younger generation, and, in decades, created a country wide infrastructure.

Major plans in Scotland — such as DALLAS — also came to zero, as the great ambition just evaporated through a lack of any real leadership or in building anything that resembled a new foundation. For all the great vision at the kick-off events, the project dissipated itself through splitting up tasks, and allowing each task to become self contained.

COVID showed a glimmer of hope for innovation in the NHS, and where we saw the emergence of a portal for your health care data related to COVID vaccinations, and an automated link whenever you were vaccinated. But, it has all stalled. It was a pin-point of innovation. The whole bit of asking someone for their CHI (Community Health Identifier) number showed that the NHS really didn’t really have any real digital touch point with citizens.

All, we need, is some basic services, and a foundation to build on. Digital identity is a fundamental part of this, and the NHS and almost all government services will have to bite the bullet sometime, and properly integrate the citizen. And, digital identity is not your healthcare identifier, it is so much more.

But, regions and nations of the world are changing and doing it at scale. I am proud to be part of the EU’s drive in providing every citizen in the EU with a digital wallet, and which will start to build towards a future which properly digitizes our work:

Conclusions

Let’s see the blueprint for the digital future. Let’s see the vision. I hope, in a decade’s time, I’m not still writing about this, and can talk about the new opportunities that have grown over the next ten years. In reality, with cloud systems and services, building a citizen-focused infrastructure is not that difficult. Keeping it secure, scaling a proper digital identity system and keeping it trustworthy will be a major challenge, but without any form of a road map, we are building on sand. The NHS does great work, but with proper digital integration of the citizen, it can be every better, and use data wisely.

And, then, when it comes to the digital integration with social care? Well, that’s in an even worse state!