Using patient data to plan better services and find a cure

From 25 May people who use health and care services in England will be able to opt out of having their confidential data shared beyond just their individual care by the NHS. This opt-out only applies to England.

What is patient data?

As a patient at a GP surgery or a hospital, for example, you’ll be able to opt-out of having your confidential patient record shared, other than by healthcare professionals involved in your care.

A patient record includes the medical information collected about you, including details like your height and weight, whether you smoke, how much you drink, any allergies, and what medications you’re taking. It may also include blood test results, images from MRI scans, and any procedures you’ve had.

What Parkinson’s UK believes

After consulting with people with Parkinson’s we developed our position – that using patient data is vital to planning health services and conducting research to find better treatments and a cure.

However, we believe that the data needs to be shared efficiently within the NHS with clear safeguards to ensure the secure sharing of data.

We recently polled members of our Research Support Network on their views of sharing their patient data, one of the respondents stated: “Parkinson’s affects millions of people and a cure is long overdue. This would come much quicker if this info was shared. Parkinson’s has been around for a long time and it’s time there were better treatments and of course a cure, so get sharing.”

Benefits of sharing patient data

We’re working with medical research charities to highlight the importance of using patient data and the option to opt out.

In the run up to 25 May the NHS will also be communicating with patients and their staff across England about the national data opt-out.

NHS England is currently developing a new system to support the opt-out, but people will be able to opt out online or via a national telephone helpline. People will also be able to change their preference at any time either online or by telephone.

Understanding how many people have Parkinson’s

Recently we estimated that around 145,000 people in the UK have Parkinson’s in 2018 and that, every year, we are seeing around 18,000 new diagnoses.

We were also able to break the data down by locality and use this to plan how we work with care providers to improve services locally and provide opportunities for exercise and therapeutic activities and involvement in campaigning, fundraising and research.  

We could only do this because we could access anonymised medical records of patients in a large database to find information that showed a diagnosis for Parkinson’s. 

To opt in or opt out?

We strongly suggest in! That way, people with Parkinson’s can have their information shared to help build understanding about the condition.

By sharing this information we can achieve better services, treatments, and even a cure, much sooner.

PIP Campaigners at parliament