Hi and welcome to Living in Leeds

Leeds is a wonderful city but we want to make it even better. 

We want to understand even more about how to diagnose, treat and prevent ill health and how to best plan health and care services.  

To do this, we want to look at how we use people’s health and care information – or data – for research and planning.  

If you live in Leeds then that data is about you, so we need you to be involved.

We want to make sure we use your data in ways that you are happy with, that you understand and that you believe is for the best. So we’ve created a new, exciting project called Living in Leeds.  

Vision

That Leeds offers the best in health and care by learning from an innovative, citywide approach to research and planning, done in new ways that local people understand and support.

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Ambition

We want Leeds to be a ‘research-ready’ city, learning from and with its people.

We want to explore how we can use local people’s health and care information more quickly and efficiently to improve care. If you live in Leeds, then that means for you too.

We will:

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  • keep Leeds’ people at the heart of how it works, seeking their views about using their health and care information – or data – for research and planning

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Keep Leeds’ people at the heart of how it works
  • make it easy for people to share and record their preferences about this

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Make it easy for People
  • make it quicker and easier for researchers and care providers to access people’s health and care information – or ‘data’

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Make it quicker
  • enable researchers and care providers better understand how to improve health and care for Leeds’ people more quickly, efficiently and in new, more lasting ways.

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Enable Researchers
  • keep Leeds’ people at the heart of how it works, seeking their views about using their health and care information – or data – for research and planning

Blue Dot Line

  • enable researchers and care providers better understand how to improve health and care for Leeds’ people more quickly, efficiently and in new, more lasting ways.

Pink Dot Line

  • make it quicker and easier for researchers and care providers to access people’s health and care information – or ‘data’

Blue Dot Line

  • make it easy for people to share and record their preferences about this
Pink Dot Line

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Why do this?

Whenever we use health and care services, the people who care for us record information – or data – about us. This helps them provide that care in the best possible ways.

But how else can we use that data in ways that benefit the people of Leeds?

Looking at data helps us understand a problem and how to tackle it.  When it comes to people’s personal health and care data, if we can join it up and understand it better, we can tackle some of the city’s hardest health challenges. 

But getting access to data for research and planning is complicated, expensive and takes time. 

We want to find better and quicker ways for our city to do this.

Listening to you

Your health and care data belongs to you. So we want to hear and understand your views and preferences for how we use your data for research and for planning services.

  • We will invite local people to help shape how we do this for the city. 
  • We want you to tell us how to best engage with your families and local communities about this.
  • We will listen carefully, respond and adapt to what we hear.

Next steps

Living in Leeds is in the discovery phase, where we are asking a lot of questions to understand the situation. Over the coming months we will be working closely with

  • the health and care workforce
  • experts from local, regional and national institutes and organisations.
  • People’s Voices Group – We are working with the People’s Voice Group (PVG), a collective of engagement leads from across health and care organisations who make sure Leeds’ people are at the heart of decisions made about their health and care.

    Together, the PVG shares the best ways to listen to and learn from people in all communities from across our diverse city and to do this in a joined up way.

    At this discovery stage for Living in Leeds, the PVG is helping us understand how we can meet our ambitions to involve you.

We will be looking into

the city’s technological capabilities

the city’s technological capabilities

the current ways of working (policies and practices)

the current ways of working (policies and practices) 

our health and care workforce’s understanding and skills

our health and care workforce’s understanding and skills 

and the best ways to meaningfully engage with Leeds people.

and the best ways to meaningfully engage with Leeds people. 

Commonly Asked Questions

It is information about you and your health and care that is recorded when you receive health care or social care and helps with your care and treatment. Each organisation you have contact with keeps its own records on you, for example, your family doctor, hospital, social care. Information may include:

  • your NHS number
  • your name, date of birth, address and contact details
  • a list of diagnosed conditions – to make sure your health and care workers have an accurate record of your care
  • medication – so everyone treating you can see what medicines you have been prescribed
  • allergies – to make sure you’re not prescribed or given any medicine you can have an adverse reaction to

Good care requires good information about you, so it’s very important that this information is recorded. But it’s also very personal – so you need to be confident that it’s looked after securely and in line with the law.

There are two main purposes for collecting information?

1. Improving your individual care

Health and care staff involved in your care will be able to access up to date information about you to support your care. 

2. Improving care for everyone

Information is collected to understand how to better meet the needs of people within Leeds to help reduce health inequalities, improve health and wellbeing with better value for money.

By law, everyone working in, or on behalf of, the NHS, adults’ and children’s social care must follow strict information governance rules designed to respect your privacy and keep all information about you safe. The laws on data protection are clear and are taken seriously.

Your details are kept safe and won’t be made public, passed on to a third party who is not directly involved in your care, used for advertising or sold.

If you don’t want your information to be being shared with people involved in your care, please contact the provider of your care – for example your family doctor – and they will help you.

If you don’t want your confidential patient healthcare information to be being used for research and planning, you can ‘opt out’ via a national data opt-out service. You can view or change you national data opt-out choice at any time by using the online service at www.nhs.uk/your-nhs-data-matters or by calling 0300 3035678.

As Living in Leeds discovers more about the ways we use data we will add relevant information to the below:

Leeds Care Record

Leeds Care Record is a joined-up digital care record which enables clinical and care staff to view real-time health and care information across care providers and between different systems.

Yorkshire and Humber Care Record

Yorkshire and Humber Care Record (YHCR) is a programme which supports the region’s vision to connect care to improve people’s lives. It does this by joining up health and care records to provide the right information, to the right person, at the right time to improve the health and wellbeing of people across the region, safely and securely.

Summary Care Record – NHS Digital

Vital medical information including medicines you take and your allergies is recorded in your Summary Care Record, giving health staff important and sometimes life-saving information when you are being treated away from your usual doctor’s surgery. For example in A&E.

Electronic Prescription Service – NHS Digital

Your prescriptions can be sent direct to a pharmacy through the Electronic Prescription Service.

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We will use what we discover to make a longer-term plan for the city over the following 18 months.