Health and Care Research
What is health and care research and why is it important?
We are committed to our population living happier and healthier lives. Research is one way that we can make this happen by providing the evidence to improve treatments and care. This could be by testing new medicines or vaccines or by completing questionnaires to help us understand how people feel about the care they receive.
Benefits to taking part in research can include learning more about your health or receiving closer monitoring. Taking part in a project may not always help you directly, but you will be helping to improve services and treatments now and in the future.
Health and care research adds to our knowledge and understanding about diagnoses, treatments and care, and people’s lived experiences. This knowledge helps us to deliver better services and contributes to the best health and wellbeing for people. Publishing the learning from research widely can positively impact health and care locally, regionally, nationally and internationally.
There is a specific need to increase the diversity of people who get involved in research, both as research recruits, and in study design. We know there is a prevalence of white, older people who get involved in research. Without diverse participants in research, there is a risk that research outcomes will not be as effective across diverse population groups and that research trials will not be designed to meet the needs of a diverse population.
Research Engagement Network
The Research Engagement Network supports and champions the involvement of patients and the public in research, working with volunteers and Voluntary, Community, Faith and Social Enterprises (VCFSEs) across all stages of the research process, and providing advice and guidance to researchers on good practice.
The team also work to raise the profile of research to encourage participation in and engagement with research studies by working with local communities. In collaboration with our system partners we are delivering an NHS England funded initiative called Research Engagement Networks (REN).
Our local Research Engagement Network is coordinated by the Norfolk and Suffolk Integrated Care Board (ICB), the Regional Research Delivery Network (RRDN) and in collaboration with Thinklusive.
This initiative creates a platform for researchers to exchange experiences, foster learning and support under-represented groups to participate in research.
The Network:
- Builds a local research environment that is supportive and inclusive for our diverse communities.
- Builds trusting, mutually beneficial relationships with the community and VCFSE sector.
- Listens to, and understands, local communities better.
- Collaborates with community members and organisations to make research more inclusive and representative.
- Highlights the need for making reasonable adjustments within research happening locally.
- Provides a check and challenge to local research teams to create more accessible research.
- Offers input, ideas, and recommendations to teams at all stages of the research process.
The Research Engagement Network for Norfolk and Suffolk comprise two key elements: the virtual network and community research hubs. These are funded jointly by NHS England and the Regional Research Delivery Network.
Virtual Network
What is it?
This is a virtual network for VCFSE groups to interact with researchers and research delivery teams to hear how they can become involved in various research studies and access training.
What does it do?
The purpose of the network is to highlight research projects to VCFSE groups that are interested in research and to hear from researchers who want to engage with VCFSE groups to enhance their studies.
Max Clark (Thinklusive) chairs a meeting every two months (1 hour, online) to hear presentations from researchers and research delivery teams to highlight relevant research projects to VCFSE groups. Max also regularly shares research projects via email so that VCFSE groups can take part in research if it is relevant to them.
Who can attend and take part?
This network is open to anyone interested in research across Norfolk and Suffolk, working in a VCFSE organisation. You do not have to have any previous experience of research. We know research can be intimidating, and there is usually lots of conversation between colleagues. These meetings are informal, and it is ok to just listen to the conversation.
What do I need to do to join the network?
Please complete the survey below to register to receive emails and the dates of upcoming meetings.
Community Research Hubs
What are they?
The community research hubs are designed to set up a process in eight local areas across Norfolk and Suffolk to support VCFSE groups to recruit members of their communities into research studies. This is important as it makes research more representative of the population and gives access to new treatment approaches that wouldn’t have been available previously.
What do they do?
Each of the hubs is a collection of around three VCFSE groups that have come together to form a core group. Currently, hubs are up and running in Great Yarmouth, Thetford, Waveney, King’s Lynn and Norwich. The VCFSE groups work together with the Integrated Care Board (ICB), Regional Research Delivery Network, Community Action Norfolk and other partners to find ways in which they can recruit members of their communities into research studies or they can support research nurses to run clinics in their community spaces.
To support the hubs, the ICB brings together all partners with the VCFSE groups that are leading each hub once a month to share learning and find out what support is needed.
Who can take part?
Once hubs are established, VCFSE groups in those areas are advised to contact their local hub in the first instance to see how they can get involved. Information on the local hubs can be obtained by contacting nwicb.researchinnovation@nhs.net. We are in the process of establishing three new hubs across Suffolk and the process for this is being led through the virtual network.
Get Involved - Be part of Research
Be Part of Research is a UK-wide service that helps people understand what research is and what it might mean to take part. It also shows what research is currently happening across the UK.
You can create a free account or search for trials and studies into health conditions you’re interested in, at locations near you. See video below for more details. The link to sign up is: https://bepartofresearch.nihr.ac.uk/
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East of England Secure Data Environment (SDE)
About the Secure Data Environment
The East of England Secure Data Environment (SDE) is a digital platform that allows approved researchers to securely access de-personalised patient data for health research.
Using the East of England SDE, researchers from the NHS, universities, charities or commercial organisations can apply to access data from de-personalised patient records from people treated in NHS settings in the East of England, for research to improve public health.
The area
The East of England includes the following regions, with a total population of 7 million people:
- Norfolk and Waveney
- Cambridgeshire and Peterborough
- Suffolk and North East Essex
- Bedfordshire, Luton and Milton Keynes
- Hertfordshire and West Essex
- Mid and South Essex
Privacy, Security and Integrity
All applications are reviewed against the same strict and consistent set of criteria to ensure they are safe, and that the research is in the public interest.
Research is vital to improve the way that we prevent, predict, diagnose and treat health conditions. The East of England SDE makes research using NHS data safer and easier, while maintaining patient privacy and retaining control of that data in the NHS.
The East of England SDE protects the privacy, security and integrity of NHS patient data during research by using:
Anonymisation all directly identifying information is removed from the data before researchers use it
Security testing and accreditation the SDE has been built to industry-leading standards of cybersecurity and has been independently tested
Minimisation researchers will only receive access to the specific data required for their approved research
Environment controls researchers can only access the approved data within the controlled environment of the SDE, where they cannot copy, delete, remove or change the data
Exit controls research outputs are manually checked to ensure that no information that could be re-identified is removed from the SDE
Verification researcher and organisation credentials and experience are validated before access
Contractual controls researcher organisations agree to legally-binding terms and conditions for use of the data
Benefit to public health assessment all applications for data access are assessed by an independent panel, which includes members of the public, against consistent and well recognised standards to determine whether they are in the public interest
Opting Out
If you are happy for your de-personalised NHS data to be used for approved research through the East of England SDE, you do not need to take any action.
If you have questions or concerns, you are welcome to ask the SDE team by emailing us at cuh.eoe.sde@nhs.net or check the information on this site.
If you do not want your NHS data to be used for research through the East of England SDE, you can opt out using one of the options below. You do not need to do both opt outs.
The East of England SDE opt-out
If you choose this opt-out, your NHS patient data will not be used in any research that takes place within the East of England SDE, but may still be used for other applicable research, such as, research using your data through an SDE in another region.
The East of England SDE opt out will apply to research projects that occur from the point of opt out, but will not apply to projects that took place before the opt out was registered.
You can make, check or change your choice:
- By phone: Call 01223 348 490
- By email: cuh.eoe.sde@nhs.net
The National Data Opt Out (NDOO)
If you choose this opt-out, NHS England and other health and care organisations will not be able to share any of your personal data with other organisations for research and planning, except in certain situations, such as, when required by law.
Visit nhs.uk/your-nhs-data-matters/ for more information.
Leaflets
You can read more information about the SDE in our leaflets below. Please get in touch if you would like to discuss printing leaflets.
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Email m.twigg1@nhs.net -
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REN Network Chair & Thinklusive
