Aisling Dolan (Fine Gael)
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I welcome the Minister of State to the House. The issue I raise is similar to the matter raised by Senator Conway. November is national diabetes month and Sunday was World Diabetes Day. Many buildings were illuminated in blue, including the University of Limerick. People in all stages of life, from young children to older people, get diabetes. The good news is that we can combat the effects of the disease through insulin and the risks can be reduced, especially with type 2, by making lifestyle changes, which can have a huge impact.

Symptoms include thirst, going to the toilet more and vision changes. The reason I say this is that many people do not know when they are prediabetic or potentially on the route to acquiring type 2 diabetes. They should take a test and go to their GP or pharmacist.

I am a member of the steering group for the cross-party diabetes committee in the Oireachtas with Diabetes Ireland. Recent data from the International Diabetes Federation showed that one person in ten internationally is living with diabetes, which is a life-long condition and one of the top ten leading causes of death globally. These new figures indicate that 537 million adults are living with diabetes, 541 million adults are prediabetic and the prevalence of diabetes worldwide is expected to rise to 784 million.

As Ireland does not have a national diabetes register, we do not have an accurate figure on the numbers affected. We cannot put a finger on it. During the Covid crisis, it was very difficult to identify this cohort of vulnerable people for vaccination. There were steps funded through Sláintecare but Covid came along and priorities had to be made. This is largely an information technology, IT, project. There is a public health crisis and there are many competing priorities, including simply working out how people get intensive care beds.

Professor Seán Dinneen is the clinical lead and consultant endocrinologist in University Hospital Galway, UHG. Excellent group funding has gone into research on endocrinology and diabetes specifically in Galway. We had the research infrastructure to do that and it is one of the areas in which we have become excellent.

In Scotland, which has a register, roughly 5% of the population has diabetes. This suggests that more than 266,000 people in Ireland have diabetes, of whom 234,000 have type 2 and 28,000 type 1. That is in comparison with the Scottish figures but, as I said, we do not have data so this is an estimate.

Professor Dinneen's number one priority, as national clinical lead, is to have a diabetes register. Diabetes Ireland also sought such a register in its pre-budget submission. We need this because we need to track prevalence, measure outcomes and look at the costs of care. That is crucial.

What supports are being offered to eHealth Ireland? There has been major investment in IT. I accept that the cyberattack on the HSE decimated the health service and had an even greater impact than Covid-19. People do not realise its impact.In what way will eHealth Ireland support the development of a national diabetes register under Sláintecare? How will we ensure that this is an integrated national register within primary care? In other words, GPs on the front line being able to take in information about type 2 diabetes and prediabetes. This is also connected to acute hospital settings.

I am sure it does not fall within the realm of this matter, but I have been calling for an electronic health record for a long time - even in my previous role. Such a record would streamline so many elements of what we want to develop in healthcare and would make everything so much more possible and feasible. It would be a way forward if we could connect primary healthcare with the acute settings through the national diabetes register. What can eHealth Ireland can do on that?

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Senator again for raising the topic of diabetes. It is incredibly timely, especially in view of the fact that we celebrated World Diabetes Day last Sunday. I am taking this question on behalf of the Minister, Deputy Stephen Donnelly. Some of the questions the Senator asked reach into other areas of health and I will hopefully get the chance to respond to them when I have read the prepared statement into the record.

Diabetes is a complex condition that has a profound impact on the quality of life of people living with it. If not well managed, it can lead to debilitating complications. The increasing prevalence of diabetes poses a major challenge to our health service, including increasing costs driven primarily by hospitalisation and treating associated complications. Management of the condition is required across the entire spectrum of healthcare delivery. This includes self-management support, care delivered through general practice, community specialist care and hospital inpatient specialist care.

Currently, as the Senator said, Ireland does not have a national diabetes register. As a result, there is no accurate figure for the number of people living with the condition. It is acknowledged that the absence of a register represents a barrier to improving care for individuals living with type 1 and type 2 diabetes here in Ireland. The establishment of a register would help tackle the prevalence of the condition and measure both outcomes and the cost of care and planning for future services. In September 2019, Sláintecare’s integration fund was allocated to the HSE to design and procure a national diabetes register demonstrator product and develop a full specification plan for a such a register. It was intended that the register would be in place by 2021. However, the project was paused because it was dependent on the input of expertise of key HSE staff who wore redeployed to deal with urgent and ongoing Covid-19 work.

The national diabetes register, along with other disease-specific registers, is now being considered as part of a wider review of Ireland’s health information strategy and legislation in light of lessons learned in recent times, along with a substantial increase in Government investment in eHealth. Such registers capitalise on the unique identification of patients and the subsequent data linkage opportunities this enables. When in place, they will operate as virtual registers and will use existing health and social care records to enable monitoring of the incidences and prevalence of the disease in Ireland. The virtual registries will identify people with specific diseases and their data will be extracted from various systems, such as hospital inpatient and outpatient records, laboratory tests and pharmaceutical data collection. Each vital registry will be allowed to require and request the provision of relevant information for health and social care organisations and anyone providing a health or social care service in order to ensure that each registry will have complete coverage of its area of prevalence.

Virtual registries will allow for the development of disease-specific registries in a way that maintains comprehensive and up-to-date information that will meet the needs of many different stakeholders. The development of a national diabetes register will have a long term benefit on the provision of appropriate health services by providing reliable information to healthcare planners and policymakers.

It is important to acknowledge the role played of GPs and how up-to-date their information systems and technology are. It is incumbent on the Department, the policymakers and the HSE to ensure that a receiving ICT network that can match where our GPs are in that regard is put in place. We will not see the overall benefit until everything is pulled together. That is why there is reference to the stakeholders. It is incredibly important. Sometimes, perhaps what is needed is there already but we just need to expand it.

Aisling Dolan (Fine Gael)
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I thank the Minister of State for her response. These delays happened because of Covid-19. The Minister of State talked about different virtual registries. What is the timeline for these? When does the Minister of State think we will see them? Some work was done. We invested in e-health Ireland. As part of our programme for Government and of the budget this year, will there be an allocation specifically for these registries? I mentioned the impact of 28,000 people with type 1. However, a HSE type 2 cycle of care programme was put in place for those with type 2. It estimates 100,000 people were eligible for the 12 months of September 2019. However, this year, only 12,000 have been seen out of that 100,000. The reason we need to be concerned is the related complications such as stroke, kidney disease, eye and foot damage and heart attacks which require hospitalisation. We have invested in e-health Ireland. Does the Minister of State think these registries will be brought forward in the coming six months?

Anne Rabbitte (Galway East, Fianna Fail)
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It would not be within my gift to put a timeline on it. The Minister, Deputy Donnelly, would have to speak to that piece. The Senator was correct in saying funding has been allocated for the e-budget. However, when there is a slippage in the numbers the Senator mentioned, one would have to ask how that happened and what the long-term costing of care is within that. Is our system not working within general practice or is it not working within the wider sphere of health? That is the first question we have to ask because that sort of leakage is unbelievable and needs immediate addressing. I will bring that matter back to the Minister, Deputy Donnelly.

However, the development of a national diabetes register remains a priority. Following substantial increase in investment in e-health, it is now being considered as part of a wider review of Ireland's health information strategy. The diabetes register, along with other specific registries, will operate as virtual registries and use existing health and social care records to enable the monitoring of the incidence and the prevalence of disease in Ireland. I acknowledge Professor Dinneen's input into this. Sometimes, we do not need to have wider registers, but we need to start with a focus group to see the results of it.