Sunday, October 1, 2023

Time is right to get individual health identifiers into the system

In the end, survival comes down to information.

It’s all about the data. Doctors make decisions every day based on their best judgement, which is based on the best information they have at the time.

Governments and public health doctors make similar judgements about strategies to use during pandemics and disease outbreaks, and again, the quality of those decisions are closely related to the quality of the data they have at hand.

That’s why the establishment of a new government agency to prepare for emerging health threats and/or pandemics is a welcome move – a good decision based on the probability of such threats occurring in the future, and the potential they have to cause widespread injury to both the human population, and the economy and businesses that support that population.

The Minister for Health will now appoint an ‘expert’ to design this agency (whether this is a public health doctor or a management consultant will tell a lot) whose task will be to focus on infectious diseases, and prepare us for pandemics and any and all and any emerging threats to public health. You can read a full report on the plans for the new agency here.

The plan then is to bring a proposal to government within six months, setting out the functions and scope of the new body. The creation of such an agency was recommended by a new report from the Public Health Reform Expert Advisory Group.

That report – led by the president of Imperial College London, Prof Hugh Brady – examined how public health systems worked in Ireland during the Covid pandemic. It found (unsurprisingly) that the most vulnerable in society were most impacted by the pandemic and response – such as elderly people, and disadvantaged groups such as Travellers and homeless people.

Prof Hugh Brady, Imperial College London

It also praised the National Public Health Emergency Team (Nphet) briefings and other national communication as a strength, but found poor internal communication in government departments, with some staff only finding out about new isolation/contact management/location specific changes on the Six-One News.

There is no doubt that we could have managed the pandemic better had we planned for it. That’s not a criticism of anyone – simply a fact. We could also have managed it better if we had had more information to hand at the time. The report refers to ‘significant innovations’ that happened in IT infrastructure during the pandemic (Isn’t it amazing what can get done if enough money is applied to the problem?) but highlights other concerns – such as the fact that Irish patients still do not have a unique or individual health identifier (IHI) code.

There are concerns among a group of people in Irish society who are worried about privacy and other ethical concerns regarding the storage of personal data. These are valid concerns and must be addressed. But whatever about the value of an individual patient identifier in the normal course of events in healthcare – and it would be a significant advantage in many ways – the value of an IHI during a pandemic could be invaluable. It could save lives.

It’s true that good data is the overwhelming factor in making good decisions, but given the speed required to make some decisions, it is inevitable that all the data can’t be collated in time. This is where an IHI could have a game-saving effect.

An IHI could potentially identify, for example, people who were particularly vulnerable to a particular virus. It would allow us to track spread and contamination. In short, it would be a really effective and useful tool for public health doctors to have.

The speed at which the Covid vaccines were developed was extraordinary. Because of that, we were spared the type of death toll that prevailed in the Influenza pandemic of 1918. Speed and information are vital in these cases, and now that there is a pressing case to introduce IHI’s for all Irish citizens – as a tool for public health during pandemics – perhaps the political will is there to finally get this milestone achieved.

This too will be a political battle. Dr Anthony Fauci – who did so much for public health in the US not just for the Covid pandemic but for decades previously – is still subject to abuse from online trolls who harass him and his family. A dedicated public servant – subjected to hatred and vile calumnies after a lifetime of service. We had some shameful episodes here, but thankfully nothing on that scale.

But there are Covid-deniers everywhere, and conspiracy theorists will have a field day with patient identifiers of any kind.

But IHIs can be created in such a way that the information derived from them, when used for public health reasons, is anonymous. (It’s important that I know, for example, that a new virus disproportionately affects say elderly men but not elderly women and only, say on the west coast, but it’s irrelevant what these people’s names are).

The possibilities of being able to target information – let alone clinical help – at specific needy groups during a future emergency would be transformative.

But in a world where the names of PSNI police officers can be released on the Internet, many people (including myself) would have doubts about the ability of Irish government IT systems to fully protect anonymity in any set-up, but surely if the will is there, it can be done.

We live in an uncertain world. By the time this agency becomes a more tangible idea our Emergency Rooms could be in chaos. There will be many other things demanding money and time. But surely, now there is some momentum to establishing some defences against future pandemics, the time is right to get IHIs into the health system, giving us the data and speed public doctors need to make the correct decisions.

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