Public member recruitment

The Secure Data Environment (SDE) team in the North East and North Cumbria (NENC) is looking to recruit eight new public members to join its growing network. This is a unique opportunity for individuals from across the region to help shape how health and care data is used safely and securely for research and planning, ensuring the public voice remains at the heart of important decisions.

More information below:

Using data – like your health record, helps researchers better understand the health and care issues that affect us all. Through research, we discover new treatments, medicines and medical tools that can change lives.  

 

This helps doctors, nurses and other health professionals make more informed decisions. It helps them learn, improve, and ultimately give people better care. 

Without research, none of this would be possible. 

Across the country, the NHS has a plan for how health data should be used more effectively, and how it should be handled safely and ethically. Part of this includes creating new Secure Data Environments – or SDEs. 

In our area, the NHS Integrated Care Board (ICB) for the North East and North Cumbria is leading this and is responsible for all the data in the SDE.  

A Secure Data Environment (SDE) is a safe and secure place for storing and accessing NHS health data. 

SDEs are built to meet the highest standards of privacy and security. They make sure that health and care data is used properly when it's needed for research, service improvement or analysis. 

Researchers can use the data inside an SDE, but the data never leaves the secure environment. This helps keep it safe. 

In short, SDEs give the NHS Integrated Care Board (ICB) in the North East and North Cumbria control over: 

  • which research projects are allowed to use health and care data 

  • the training and approval users need before they can access the data 

  • who can access the data 

  • what type of data they can see – only what's relevant to their study 

  • what they can do with the data while using the SDE 

Before any researcher can access data in the SDE, their request is carefully checked. 

In our region, two key groups help with this: 

  1. The Data Access Committee (DAC) – made up of experts in areas like law, finance, ethics and IT security, along with members of the public. 

  1. The Public Evaluation Group (PEG) – a group led by members of the public, who are volunteers from the SDE PPIE public members group.  They make sure research is in the public interest and that local people’s data is being used appropriately. 

Lots of different researchers will benefit from better access to health and care data. They all have different skills and needs – but the aim is the same: to improve care for patients. 

For example, researchers might use the data to work out how many people are likely to develop certain conditions in the future. This helps the NHS plan ahead and deliver better services. 

A ‘public member’ is someone who joins a committee, steering group or panel to make sure decisions are made in the public’s best interest.  

We use the term ‘public member’ to describe someone who is not a clinician, researcher or manager. Instead, they bring a different and important perspective based on their own experiences and views.

Public members may be: 

  • people who use health and care services 

  • unpaid carers 

  • advocates or people who work with voluntary or support organisations 

  • anyone with an interest in how NHS data is used for health and care research 

Public members lead by example. They are honest, open, respectful and supportive. They listen, ask questions, and help shape decisions that work for everyone. 

On the North East and North Cumbria (NENC) Secure Data Environment (SDE) programme, we see our public members as essential. They are our “critical friends” – helping us stay on track and do the right thing. 

Since the start of the SDE programme, we’ve made sure that public voices are part of the journey. Public involvement is key to building trust and using patient data in a way that is ethical and respectful. 

So far, our public members have helped by: 

  • taking part in main governance groups 

  • shaping the programme’s strategy and direction 

  • testing and challenging how researchers apply to use the data 

  • helping co-produce important communications and our public involvement strategy 

  • reviewing and making recommendations about research applications 

As the programme grows, we hope public members will: 

  • continue offering their honest views and advice 

  • act as local ambassadors for the NENC SDE 

  • support others by sharing knowledge and experiences 

Once someone becomes a public member, we will place them in a group that matches their interests and how much time they can give. 

Public members usually have a strong understanding of what matters most to people who use health and care services. 

They help by raising the kinds of questions and concerns patients, carers or communities might have about how data is being used. 

Their views are different from those of professionals such as clinicians, researchers, managers or academics. That’s what makes their role so valuable – they bring a broader, more personal perspective to the work of the Secure Data Environment. 

Each public member is expected to: 

  • be able to review issues and contribute to the advisory process 

  • review the research projects being proposed to understand if the aims seem credible and beneficial and if the use of healthcare data seems relevant and appropriate 

  • engage in constructive debate without being adversarial 

  • have the confidence to question information and explanation supplied by others, who may be experts in their field 

  • maintain confidentiality as required  

  • take an objective view, seeing issues from different perspectives – especially patient, carer and community perspectives 

  • be committed to values of selflessness, integrity, objectivity, accountability, professionalism, impartiality and consistency 

  • demonstrate a commitment to patient and public involvement and engagement 

  • have an awareness or interest in the issues covered by the work of the SDE from a patient or general public perspective 

Public members will be provided with all the information and any training they need to carry out their role. 

We also offer support for public members before, during and after their time on a Secure Data Environment committee or group. 

On appointment, public members will take part in an induction programme. All public members are given a key contact, or ‘buddy’ to guide them through the task they will be involved in.  Buddies are volunteers from the current SDE PPIE group members who want to help and support new recruits.

Public members will be paid for their time. This includes time spent in induction, attending meetings, and preparing for them. 

You will be paid £27 per hour, and payments are made each month. Travel can be arranged for you, or you can claim back travel costs if you pay for them yourself. 

As a public member for the SDE PPIE, you will be invited to attend at least one meeting each month. These regular meetings usually last up to two hours. Sometimes you’ll be sent information to read in advance, and you will also be paid for this time. 

Most meetings take place online, but we do try to bring everyone together in person now and then. Meetings are usually held during the working day, but we are reviewing times to make sure they work for everyone’s schedules. Meeting dates are planned up to 12 months ahead. 

You may also be asked to attend other forums, events or meetings. If you do, you’ll be paid the same rate and travel expenses will be covered. 

The SDE PPIE programme has been running since late 2023, and many groups and committees are already up and running. However, new public members are very welcome to join these groups, and you’ll be supported as you settle into your role. 

Groups you might be involved in include: 

  • SDE Strategy Group 

  • SDE Programme Board 

  • Data Access Committee 

  • Public Evaluation Group 

  • Temporary ‘task and finish’ groups – for example, helping with communications or website content. 

Public members are considered experts by experience in public involvement. 

What you’ll talk about will vary depending on the group. Often, your role will be to help make sure projects are in the public interest - looking at them through the eyes of a patient, carer, service user or community member. 

You might also join conversations about overall strategy, performance, or how we communicate with the public. 

Public members should be able to: 

  • take part in the induction and any training provided 

  • actively listen to others and be open to different opinions 

  • ask questions about information provided 

  • share their views with healthcare and management colleagues at all levels, across a range of organisations 

  • access online documents and use basic IT skills to read and reply to emails and attend virtual meetings 

  • be prepared to offer their time to a minimum of the monthly meetings 

  • represent the Secure Data Environment at other forums, meetings and events as requested  

NENC SDE Strategy Group 

This group leads on overall strategy, governance, and investment decisions for the SDE. It meets every three months to review progress. There is one public member on this group.  There is one public member on this group.

SDE Programme Board 

This group plans and monitors how the SDE is delivered. It manages partnerships, approves projects, reviews performance and oversees budgets and procurement. It also includes one public member. 

Data Access Committee (DAC) 

This new committee oversees how NHS data is used for research and service improvement in the North East and North Cumbria. 

It includes professionals and two public members who have an interest in the use of data and its impact on care. 

The Public Evaluation Group (PEG) 

This group is made up entirely of SDE public members. They review research applications and provide recommendations to the NHS Integrated Care Board (ICB) about whether these are in the public interest. 

Project Support Service (PSS) 

The PSS is an independent team that manages the whole application process. They check every research proposal to make sure it is: 

  • Secure 

  • Legal and ethical 

  • Financially sound 

They then pass their recommendations to the ICB’s Research and Data Sub-Committee, which makes the final decision on whether the researcher can access NHS data. 

More about health data

The NHS has kept records of patient care since 1948. Today, most of this information is stored digitally. 

 

When used for research, your personal details are removed to protect your privacy. This is called anonymisation or pseudonymisation. It means no one can identify you from the data. 

 

When grouped together with data from many other people, researchers can spot patterns and trends. This combined, anonymous data is often called “NHS data.” Keeping it safe and confidential is a top priority. 

NHS data helps us answer important questions - about common conditions, rare diseases, and everything in between. 

For example: 

 

  • Researchers use it to study illnesses and discover new medicines, treatments or devices. 

  • NHS analysts use it to check how services are working and how they can improve. 

Research and analysis are currently carried out through a process that involves data being distributed. The current procedures do a good job to make sure patient data is kept safe, privacy is protected, and that data sharing is of benefit to patients. However, there are things we can do better to improve these procedures. 

  • Transparency. It is difficult for individuals to understand, and challenge, how their health data is being used. 

  • Efficiency. Healthcare organisations must be sure the individuals and organisations it shares data with meet all the legal and regulatory requirements to handle data safely. The process for doing this is time-consuming and costs the NHS money. 

  • Accessibility. The process for researchers and analysts to access data is complicated, slowing down findings which can be used to develop new treatments and improve NHS services.