Help Us Improve Care for People with Long Term ConditionsThe NHS in Heywood, Middleton and Rochdale, in collaboration with MSD, a pharmaceutical and healthcare company and Verily, a health technology company, is developing a new project that aims to improve patient care for people who have, or may develop, long term health conditions.

Through analysis of non-identifiable patient data, we aim to offer better targeted care to people with existing conditions such as diabetes and heart and lung diseases. We also hope to identify those most at risk of developing long term ill health in the future so that we could detect illness sooner and keep people healthier longer.

This leaflet tells you more about the project. It describes how we plan to use health data and the steps we are taking to make sure all personal information is kept safe and secure. It also describes how you can opt-out so that your data is not used as part of the project.

How can you find out more?

You can find out more about this project online at: www.hmr.nhs.ukIf you have a particular question, you can email us at: HMRCCG.Testbed@nhs.net

What do you need to do?

You don’t need to do anything if you are happy for your non-identifiable data to be included in our analysis to identify potential ill health. The aim of the project is to improve the care delivered directly to individuals and patients’ implied consent enables your practice to include you in the project so that you share in any benefits. If you don’t want to be included, you can opt out using the form below.

What if I don’t want to participate?

There is no obligation to participate in this project. If you would rather not take part, please fill in the information below which will be used to ensure that your data will be excluded from all future analysis. You can choose to opt out at any time.

Opt Out Form

If you opt out, your information will not be used in any future data analysis undertaken as part of this project. In order to ensure your data is successfully excluded and not re-incorporated at a future date, we will maintain a list of the codenames for patients that have opted out – these codenames will not be identifiable outside the NHS.

Dear Practice Manager, please opt me out of this project

Name:

Date of Birth:

NHS Number (If known):

Signed:

Date:

Please give or post the completed form to your local GP practice.

For GP Office Use Only

Actioned by:

Date:

Added to the patient notes confirmed:

CORP-1170419-0005 June 2016

What does the project involve?

Hospitals, GPs and other health professionals already collect vital health data so that they can provide you with the best possible care. We aim to analyse this information to identify overall trends and patterns that signal chronic ill health. The results will be available to your GP practice so that they can offer better targeted care. Your own GP practice staff will be the only people who can identify the information as yours.

The project will enable GPs to better identify patients who are at greatest risk of developing long term illnesses and to intervene earlier, preventing ill health or delaying its onset. For those patients who have already been diagnosed with a long term condition, GPs will have information about those likely to have greater risk of a further deterioration in their health, helping them reduce need for emergency care.

To start, we will analyse data patterns to identify people at risk from three particular causes of long term ill health:

• Chronic obstructive pulmonary disease (COPD), which includes conditions such as chronic bronchitis and emphysema • Heart failure• Diabetes

If the project improves care, we will consider extending it to examine other areas of long term ill health.

How will we do this?

To identify patterns of ill health and improve direct patient care, non-identifiable health data needs to be shared between the partners involved in the project. This will be done securely so that personal data is properly protected at all times, meeting all the requirements of the Data Protection Act and the duty of confidentiality.

Only “non-identifiable” data will be shared with MSD and Verily. This means that before any data is shared by a GP practice, any information which could be used to identify individual patients is removed and replaced with a “pseudonym” - in this case, a number. As a result, no patient is identifiable from the data other than by GP practice staff. We will also encrypt the data and access will be restricted to designat-ed individuals in the NHS. This means that no one outside the NHS will be able to identify you. This process is also known as "pseudonymisation".

Non-identifiable data will be transmitted securely and stored within a system that is both physically secure from intruders and protected by firewalls to prevent electronic access from outsiders. Data will be managed in line with strict legal and regulatory requirements for data security.

We will ensure that personal data is kept safe and remains properly secured at all times. GP practices involved in the project have approved the data security arrangements.

Who is involved in the project?

The project is a partnership between:

• NHS Heywood, Middleton and Rochdale Clinical Commissioning Group• Local participating GPs• MSD, a pharmaceutical and healthcare company• Verily (formerly Google Life Sciences), the life sciences and healthcare company of Alphabet

The project is part of a national programme to develop and test new applications of technology in the NHS, to provide better care for patients as well as better value for taxpayers. It aims to find innovative new ways to improve health.

The national programme is overseen by NHS England.

How will this benefit you?

The project aims to provide your GP practice with better information about patients already diagnosed with COPD, heart failure and diabetes. Practice staff will be better placed to help patients manage their own care to stay healthier. As a result, patients could have fewer admissions to hospital and be able to manage more of their own care at home.

Even if you do not currently suffer from long term ill health, the project can still benefit you. Your GP will be alerted if data suggests that you may be at risk ofdeveloping chronic heart or lung diseases, or diabetes. They will be better able to help you stay healthier longer.