Improving dementia treatment and care through data

We often hear about “big data,” but what does it really mean? In simple terms, it’s about huge sets of information that we can now collect and store thanks to advances in technology. Big data is transforming everything, how we live, travel, even the healthcare we receive. During the pandemic, for instance, NHS data was key in tracking outbreaks, rolling out vaccines and helping life return to normal. Many of us also use fitness apps or trackers to keep tabs on our own health.

Data has helped answer big questions in other diseases – so why not use it to address uncertainties around new dementia treatments like lecanemab and donanemab? We spoke to David Thomas, Head of Policy and Public Affairs at Alzheimer’s Research UK, about how collecting real-world data can deepen our understanding of these treatments and guide their use in the NHS.

Why is data collection so important in dementia?

The fact is we haven’t invested in the UK in collected data about dementia. For example, we’re missing key details, like the age people are diagnosed, the causes of their dementia, and factors like gender, ethnicity, and socioeconomic background. The data we do have is inconsistent across England, Scotland, Wales, and Northern Ireland. If we can start collecting and publishing this data more routinely, we’ll be able to see whether the changes we make in diagnosing, treating, and caring for people with dementia are actually working. That will help us improve care and plan for the future.

Having this comprehensive data is crucial for policymakers and funders, as it shows the true impact of dementia and informs decisions about how resources should be allocated. This becomes even more important now that new Alzheimer’s treatments like lecanemab are becoming licenced. By collecting data not just from clinical trials, but also from everyday healthcare (so-called “real world evidence”), we can learn how these treatments work in practice, ensuring they’re safe and effective, and accessible to all who stand to benefit.

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

What unresolved questions about new treatments could data collection help answer?

Even though clinical trials for lecanemab and donanemab have shown some modest benefits for people in the early stages of Alzheimer’s, there are still many unknowns. Collecting real-world data can help answer questions like:

• When should treatment start and stop? In donanemab trials, treatment was stopped once certain brain markers dropped to a specific level, but we don’t know how long it takes for those markers to return, or if patients will need to be treated again. And if they do, when?
• What about side effects? Both drugs can cause a side effect called ARIA, which leads to brain swelling or bleeding. In trials, around 22% of patients on lecanemab and 37% on donanemab experienced ARIA, with a higher risk for people with a specific genetic profile (APOE4). We need more data to understand how often ARIA happens in the general population, how long it lasts, and if there are particular groups of people who are at risk of side effects.
• What are the long-term effects? Right now we only know the effects of these drugs over 36 months, and the trials didn’t reflect the full diversity of the real world. We need to track how these treatments affect people over time and understand who benefits most—especially across different ages, ethnicities, and health conditions.

Because these treatments are likely to be expensive, the lack of answers to these questions makes it harder for bodies like NICE (National Institute for Health and Care Excellence) and SMC (Scottish Medicines Consortium) to decide whether to make them available on the NHS. Real-world data collection will be crucial to complementing clinical trial data, resolving these uncertainties and ultimately ensuring these treatments make it to people who could benefit.

What is Alzheimer’s Research UK doing about this?

Alzheimer’s Research UK is taking steps to make sure the NHS collects data on new dementia treatments. We’ve partnered with Alzheimer Scotland, Alzheimer’s Society, Dementia UK, and the Royal College of Psychiatrists to develop a policy briefing on how this data collection should work. We’ve also heard from clinicians and people who have set up similar systems in the UK and internationally. Together we’ve written to Dr. Jeremy Isaacs, the National Clinical Director for Dementia & Older People’s Mental Health for NHS England, urging him to take the lead on this important issue and will be sharing the briefing with policymakers and others with an interest across the UK.

Our proposal is built around several key principles:

• NHS leadership: The NHS should take charge of the data collection process, working closely with industry and other partners including healthcare professionals and charities to make sure it’s done right.
• Timely implementation: Data collection needs to start as soon as NHS clinicians can prescribe the treatments, and conversations between healthcare professionals, regulators, and pharmaceutical companies should happen now to ensure a smooth rollout.
• Minimal workforce burden: To keep healthcare staff engaged, we need to make sure that data collection doesn’t overwhelm them, while maintaining high data quality.
• System integration: The data needs to fit seamlessly into the NHS’s existing systems and workflows.
• UK and international collaboration: Working together across the UK and with global initiatives 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 results.
• Patient-reported outcomes: Patients and caregivers should have their voices heard, with feedback on quality of life and the impact of treatment included in the data collection process.

Who should be responsible for this?

The NHS should take the lead in collecting data on new dementia treatments, working closely with industry, healthcare professionals, patients, regulators, and other key stakeholders. Together, they can develop standardised data requirements and ensure the analysis is consistent across the UK.

If local health trusts or boards are responsible for delivering the treatments, data collection should be mandatory and uniform. Without a standard approach, the data might not be compatible or useful for improving dementia care and research and therefore delay uptake and progress.

Has this approach worked in other major conditions, like cancer?

Yes! In cancer treatment, real-world data collection has been a game-changer. Take the Systemic Anti-Cancer Therapy (SACT) dataset in the UK—it requires all NHS providers administering cancer treatments to submit data, which is used to guide decisions on treatment funding. Between 2016 and 2023, this system helped support nearly 47,000 patients and informed treatment use across the NHS.

In the US, the Centers for Medicare & Medicaid Services (CMS) created a registry to monitor how new Alzheimer’s drugs like lecanemab are performing in the real world. And the Alzheimer’s Network for Treatment and Diagnostics (ALZ-NET) is another US initiative gathering data on how these drugs affect patients.

By learning from these models and using existing infrastructures like SACT, the NHS can lead the way in dementia treatment while contributing to global research.

How can the public support this?

Big change happens when lots of people take small actions. We’re working closely with Alzheimer Scotland, Alzheimer’s Society, Dementia UK, and the Royal College of Psychiatrists to push for better data collection, but we need your help too. If you’d like to support our future campaigning efforts, sign up now.