Improving dementia treatment and care through data

We often hear about “big data,” but what does it actually mean? Simply put, it refers to the vast amount of information that we can now collect and store thanks to advances in technology. is. Big data is transforming everything from how we live, how we travel, and even the healthcare we receive. For example, during the pandemic, NHS data has been key in helping us track outbreaks, roll out vaccines and get life back to normal. Many of us use fitness apps and trackers to monitor our health.

The data is helping answer big questions in other diseases. So why not use data to help resolve uncertainties about new dementia treatments like lecanemab and donanemab? We spoke to David Thomas, Head of Policy and Communications, Alzheimer's Research UKwe discuss how collecting real-world data can improve our understanding of these treatments and guide their use in the NHS.

Why is data collection so important in dementia?

The fact is that we are not investing in the UK to collect data on dementia. For example, important details such as age at diagnosis, cause of dementia, gender, ethnicity, and socio-economic background are missing. The data we have is inconsistent across England, Scotland, Wales and Northern Ireland. If we could collect and publish this data more regularly, we would be able to see whether the changes we make in the diagnosis, treatment and care of people with dementia are actually working. It helps improve care and plan for the future.

This comprehensive data is critical to policy makers and funders as it shows the true impact of dementia and informs decisions about how resources should be allocated. This is even more important now that new Alzheimer's drugs like lecanemab are being approved. By collecting data not only from clinical trials but also from everyday medical care (so-called “real-world evidence”), we can learn how these treatments actually work and ensure that they are safe. We can ensure that it is effective and available to everyone who tolerates treatment. advantage.

For the NHS, this is a huge opportunity to gather valuable real-world evidence, attract global investment and ensure people in the UK are among the first to benefit from new treatments and innovations.

What are some unanswered questions about new treatments that data collection might help answer?

Clinical trials of lecanemab and donanemab have shown some benefit in people with early stages of Alzheimer's disease, but there are still many unknowns. Collecting real-world data can help answer questions such as:

• When should treatment start and end? In the donamab trial, treatment was stopped when certain brain markers fell to a certain level, but how long does it take for those markers to recover and whether patients need to be treated again? I don't know if. And if so, when?
• What about side effects? Both drugs can cause a side effect called ARIA, which causes swelling and bleeding in the brain. In the trial, approximately 22% of patients in the lecanemab group and 37% in the donanemab group experienced ARIA, with people with a certain genetic profile (APOE4) at higher risk. More data is needed to understand how often ARIA occurs in the general population, how long it lasts, and whether there are specific people at risk for side effects.
• What are the long-term effects? Currently, the effects of these drugs are only known over a 36-month period, and trials do not fully reflect real-world diversity. We need to track how these treatments affect people over time and understand who will benefit most, especially across different ages, ethnicities, and health conditions.

These treatments are likely to be expensive, and the lack of answers to these questions has led to organizations such as NICE (National Institute for Health and Care Excellence) and SMC (Scottish Medicines Consortium) to ensure that they are available in the NHS. It's becoming difficult to decide whether it can be done or not. Real-world data collection will complement clinical trial data to resolve these uncertainties and ultimately ensure that these treatments reach those who may benefit. It's important.

What is Alzheimer's Research UK doing about this?

Alzheimer's Research UK is taking steps to help the NHS collect data on new dementia treatments. We have partnered with Alzheimer's Society Scotland, Alzheimer's Society, Dementia UK and the Royal College of Psychiatrists to develop a policy brief on how this data collection should work. We also heard from clinicians and people who have set up similar systems in the UK and overseas. We have jointly written to Dr Jeremy Isaacs, National Clinical Director for Dementia and Older People's Mental Health at NHS England, asking him to take the lead on this important issue. and will share this overview with policy makers and interested parties around the world. England.

Our proposal is built on several important principles.

• NHS leadership: The NHS should take ownership of the data collection process and work closely with industry and other partners, including health professionals and charities, to ensure it gets it right.
• Timely implementation: Data collection needs to start as soon as NHS clinicians can prescribe treatments, and conversations between healthcare professionals, regulators and pharmaceutical companies need to start now to ensure a smooth rollout. you need to do.
• Minimize employee burden: To keep medical staff engaged, you need to avoid overwhelming data collection while maintaining high data quality.
• System integration: Data must fit seamlessly into the NHS's existing systems and workflows.
• UK and international cooperation: Working across the UK and in collaboration with global initiatives, we will help streamline data sharing, improve dementia treatment and care, and advance research.
• Informed clinical practice: This data should support regular updates of clinical guidelines and improve patient care by refining treatment strategies based on real-world outcomes.
• Patient-reported results: Patients and caregivers need to have their voices heard by including their feedback on quality of life and treatment impact in the data collection process.

Who should be held responsible for this?

The NHS should lead the way in collecting data on new dementia treatments, working closely with industry, health professionals, patients, regulators and other key stakeholders. Together, we can develop standardized data requirements and ensure consistency of analysis across the UK.

Where local health authorities or health boards are responsible for the provision of care, data collection should be mandatory and uniform. Without a standardized approach, data may not be compatible and useful for improving dementia care and research, which may result in slower data uptake and progress.

Has this approach worked for other major diseases, such as cancer?

yes! Real-world data collection is revolutionizing cancer treatment. Take, for example, the UK Systemic Anti-Cancer Therapy (SACT) dataset, which is required to be submitted by all NHS healthcare providers delivering cancer treatment and used to guide treatment funding decisions. used. Between 2016 and 2023, the system supported around 47,000 patients and helped them access informed care across the NHS.

In the United States, the Centers for Medicare and Medicaid Services (CMS) has created a registry to monitor how new Alzheimer's drugs like lecanemab are performing in the real world. The Alzheimer's Disease Treatment and Diagnostic Network (ALZ-NET) is another U.S. effort to collect data on how these drugs affect patients.

By learning from these models and using existing infrastructure such as SACT, the NHS can be at the forefront of dementia care while contributing to global research.

How can the people support this?

Big changes happen when many people take small actions. We work closely with Alzheimer's Society Scotland, Alzheimer's Society, Dementia UK and the Royal College of Psychiatrists to drive better data collection, but we also need your help. is. If you would like to support future campaign activities, please Sign up now.