Using and sharing personal health data in Cheshire and Merseyside: have your say

Using and sharing personal health data in Cheshire and Merseyside: have your say

Are you interested in how personal health data is used in health research, including projects carried out by commercial companies? 

NHS Cheshire and Merseyside and the Liverpool City Region Civic Data Cooperative are offering two ways to get involved and have your voice heard.

Community engagement events

Two community engagement events will give local people the chance to meet and share their views on how health data should be shared. 

The focus will be on sharing data for health research with commercial organisations and industry through the Cheshire and Merseyside Secure Data Environment (SDE). 

The SDE is an online platform that securely stores health and care data. It brings together information from important areas of health and care in Cheshire and Merseyside – such as GP practices, community and mental health services, hospital services and social care. 

The events will provide a chance to understand how and why health data would be shared with organisations – such as pharmaceutical companies – and what the long-term benefits could be.

Participants will take part in relaxed discussions as part of a small group – sharing views and ideas that could help shape future decisions.

The events, which are being held in partnership with the Liverpool City Region Civic Data Cooperative, take place on:

• Friday 4 October 2024, 10am to 12.30pm at Civic Health Innovation Labs, Liverpool Science Park, 131 Mount Pleasant, Liverpool, L3 5TF 
• Wednesday 9 October 2024, 10am to 12.30pm, Crewe YMCA, 189 Gresty Rd, Crewe, CW2 6EL

Participants will only need to attend one of the two above events.

Event participants will be paid for their time and contributions.

Places are limited and must be booked in advance. To register your interest, please email mlcsu.dia@nhs.net or call 07341 792998 by 5pm on 23 September 2024. Find out more on the Data into Action website.

Data into Action Patient and Public Advisory Group 

NHS Cheshire and Merseyside is inviting people to join a new Patient and Public Advisory Group (PPAG) for the Data into Action (DiA) programme.

The group will make sure the views and experiences of patients and the public are included in decision-making processes, so that local people’s perspectives count.

Through bi-monthly meetings, members will be able to share their views on data initiatives. The group provides a chance to learn more, contribute to discussions, and have an influence on how health data is used in Cheshire and Merseyside.

As a member, you could be involved in:

• Making recommendations on public engagement plans around individual research projects.
• Advising on public and patient priorities in relation to core issues about how health data is used and shared.
• Reviewing and contributing to documents.
• Commenting on the messaging and design of communications, such as website content.
• Influencing decision making about public events.

Recruitment is now underway, with the first meeting set to take place later this year. 

To apply, you must live in Cheshire or Merseyside and be aged 18 or over. You don’t need any special qualifications – you will simply be expected to take an active part in meetings, give constructive feedback, and speak up for the interests of patients and the public.

PPAG members will be paid for their time and contributions.

To find out more and apply to be a member, please visit the Data into Action website. Applications close at 5pm on Monday 14 October 2024.