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Your data, your power: How you can help save lives

Kirsty MaraisClare van LyndenSusan MitchellEmily CookEmma HardwickHelen DaviesMelody Paton Borchardt

When shared in a safe and ethical way, Alzheimer’s Research UK strongly believes health data can save lives.

That’s why we’re excited by the new videos produced by Understanding Patient Data that give a closer look at how your health data is being used and the incredible impact it can have.

The potential impact of your data is what gives it so much power. Your health data, and what you decide to do with it, can help our healthcare system provide the best care possible, not just for you, but for others as well.

How your health data can help save lives

Although Alzheimer’s Research UK doesn’t collect or store any medical records, many of the studies we fund are reliant on people who give their health information to conduct research.

For example, in a study underway with the University of Manchester and Goldsmiths and University of London, primary care records are being used to try to prevent dementia by developing a technique to calculate an individual’s risk based on their medical records. Identifying people at high risk of developing conditions like stroke and heart disease has become a feature of modern GP care and a similar approach for dementia could allow preventative actions to target people earlier, at a time when measures to reduce the risk of dementia are likely to have the greatest impact.

Similarly, our Insight 46 study is working to better understand and track early changes in the brain in dementia and possible factors that may influence an individual’s risk of developing the condition. All volunteers in the study were born within the same week in March 1946 and analysis of their health data throughout life has already shed light on differences in infant development, educational attainment, and risk of conditions like high blood pressure and mental health problems. Now that the volunteers are reaching their early 70s, we have a once-in-a-lifetime opportunity to study their brain health in later life. This work could result in findings that benefit future generations.

Other projects are working to gather larger sets of information by crossing borders. iASiS, an international research project across five countries, is bringing together different types of patient data from research databases (like medical records, brain images, and genetic information) to create a single platform to give new insights into Alzheimer’s disease. In addition, the European Medical Information Framework links 60 million patient records to streamline the groundwork needed to test potential new treatments.

Safety and Concerns

In a digital age, you’re wise to be cautious about the kind of information you share and how identifiable that data is. Ultimately, it’s a personal choice.

To make a decision, you need to understand what type of data you’re sharing: personally identifiable, de-personalised or anonymised.

Personally identifiable data includes things like a person’s name, address, postcode, or date of birth.

De-personalised data includes fewer details than personally identifiable data but has the potential to be traced back to an individual. For example, a patient’s age and gender may be supplied but with no name or date of birth.

Anonymised data is information from many people with few details that prevents individual data from being extracted. For example, the number of people who have been prescribed a certain medicine over ten years in five cities might be released but with no personally identifiable information on those individuals. This information is published more openly than the others.

It’s also important to understand how your data will be protected. For example, data collected through NHS England is shielded in several ways:

  1. By removing identifying information (AKA anonymising your data).
  2. Using an independent review process for all requests for data.
  3. Ensuring strict legal contracts are in place before data is transferred.
  4. Implementing robust data ​security standards.​​​​​​

Researchers who request this data for use in a study have their request reviewed by a regulatory board that ensures the reason for using the data is appropriate. Data is anonymised whenever possible, and researchers are given the minimum amount of information for each patient needed to answer their research question. This data must be stored securely, and a legal contract must be signed before data can be transferred.

Understanding Patient Data offers some great resources about what data is available and what safeguards are in place.

How you can help

Join us on Facebook and Twitter and share videos from Understanding Patient Data that we’ll be posting over the next couple of weeks, and help us spread the word that data can save lives.

If you would like to volunteer to take part in dementia research and use your data to help bring about the first life-changing treatment for dementia, please consider enrolling in Join Dementia Research.

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