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Recruitment of public members for Secure Data Environment

We have 10 roles for members of the public to sit on a range of groups supporting the Secure Data Environment programme. The information below sets out what the role looks like and how it can make a difference to how we carry out research and development of health and care data in the North East and North Cumbria.

Background information

NHS data helps our doctors and nurses to make better decisions when providing care and it helps our researchers to discover life-changing new treatments. Nationally, the NHS has set out a strategy about how we use data more effectively and save even more lives by making the NHS more data driven.

It is critical that this transition ensures that patient data is handled safely and ethically. To achieve this, the Department of Health and Social Care and NHS England are investing £200m nationally to move from processes that rely on data being shared, to a system where health and care data is securely accessed.

This will be done using online platforms known as Secure Data Environments, which are designed to give NHS data more protection. The North East and North Cumbria Secure Data Environment is one of 11 regional programmes which is being funded as part of this work.

What is NHS data?

The NHS has recorded data about every interaction with each patient and service user since 1948, much of it now in digital form. The NHS keeps our health and social care records safe to ensure we get the care we need.

Our individual information can also be combined with lots of other peoples. This looks very different to a person’s individual medical record. It allows analysts and researchers to see patterns and trends. The combination of all this different information is what we call “NHS data”. The confidentiality and safety of NHS data is paramount. There are safeguards to stop identification of individuals from data for analysis, usually by anonymising or pseudonymising the data. This means the personal details relating to the data is either removed, or replaced with a code.

Why is research and analysis using NHS data valuable to the public?

NHS data can be used to answer a huge variety of questions. These range from problems that affect the whole population, to small groups of people with rare conditions. Because of the diversity of the UK population, NHS data has enormous value.

Examples of people who use NHS data:

  • NHS analysts, to check the quality of existing services and identify potential improvements.
  • Academic and clinical researchers, to gain a deeper understanding of diseases and identify new life-saving medicines and treatments.

It is really important that NHS data is appropriately protected and there are safeguards around access.

What is the current process for using NHS data for analysis?

Research and analysis are currently carried out through a process that may involve data being shared with approved researchers. 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 the current procedures.

What are the drawbacks in the current way of sharing data?

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 can be done more efficiently.
  • 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.

What is a Secure Data Environment?

Secure Data Environments give approved researchers access to NHS data.

They uphold the highest standards of privacy and security of health and care data when used for research, analysis, service evaluation and improvement.

They allow approved users to access and analyse data without the data leaving the environment. Part of the process to approve projects and users will be through a specific group called the Data Access Committee.

In summary, Secure Data Environments allow organisations to control:

  • Which projects should use health and care data
  • What training and accreditation users need
  • Who can become a user to access the data for a project
  • The data that users can access which is relevant to a study or project
  • What users can do with the data in the environment.

A range of different users will benefit from improved access to health and care data. These users have different data requirements and skill sets and need to access data, for example, understanding how many people may develop certain health conditions in the future to predict trends.

The different governance groups are set out below. All the Secure Data Environment committees and groups will include professionals and public members.

Secure Data Environment Steering Group

This group approves the Secure Data Environment governance and hosting or services arrangements, it leads regional SDE strategy, hosting, governance and service development.

It approves strategy/policy/investment decisions and establishes its strategic priorities. It has quarterly performance reviews of Secure Data Environment strategy, plans and outcomes.

Secure Data Environment Programme Group

This group is responsible for the planning and monitoring of the Secure Data Environment implementation. It takes a lead in partnership development and management.

It governs the project pipeline and tracks implementation, undertakes quarterly performance reviews, and take responsibility for finance and procurement monitoring.

North East and North Cumbria Data Access Committee

The Data Access Committee is a new body responsible for overseeing access to NHS data for research and development in the North East and North Cumbria.

The membership includes professionals as well as public members who have an interest in the use of NHS data and research and the impact it has in the healthcare of communities.

What is a public member?

A public member is a term that is used to refer to someone who serves on a committee, steering group or panel of an organisation to enhance its governance by acting as an advocate for public interest.

We use the phrase public member to refer to someone who does not work as clinician, researcher or manager and can offer a different perspective.

Public members can include:

  • people who use health and social care services
  • unpaid carers
  • advocates, or people who work with a relevant voluntary or support organisation
  • people who have a general interest in the use of NHS data in relation to health and care research and development

Public members will lead by example by displaying behaviours of honesty, openness, responsiveness, courtesy and leadership.

The role of public members

There will be around ten public members who will support the work of the different governance groups within the Secure Data Environment programme.

Once recruited, public members will be allocated to different groups depending on their interests and availability.

Public members usually have a broad understanding of what matters most for people using health and care services.

They contribute to a committee's work by contributing what they think patients, people who use services, carers, or communities might want to ask or comment on in relation to the issues under discussion.

Public members offer a different point of view from other people on a committee who are likely to be clinicians, researchers or managers and academics.

Their key purpose is to provide a broader perspective to the Secure Data Environment’s considerations.

How we support public members

Public members will be provided with all the information 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 to guide them through their committee's work. Each public member will have a key contact who will be on hand to answer any questions.

Payments and remuneration

Public members will be paid an attendance fee for their time spent in induction, time spent in meetings and to prepare for meetings.

This will be £27 per hour. Travel will be arranged, or costs reimbursed as needed for the role.

How much time is needed?

It’s expected that public members will attend a maximum of one meeting a month which will last up to two hours. These will take place during usual business hours, and they will be planned out 12 months in advance.

There will be a mix of virtual and in person meetings. Each meeting will require around four hours of preparation time.

In total public members can expect to contribute up to 7-8 hours a month of their time for approximately £162 to £189 remuneration plus travel expenses. Public members may be asked to attend other forums, meetings and events, this would be remunerated at the same rate including travel expenses.

During their time on a governance group public members are asked to actively contribute to the discussions.

They will be sent papers for the meeting in advance and before each meeting, they will need to prepare. This includes, reading papers and thinking about their contributions.

Discussions will depend on the different groups, it could be about prioritising investments or setting the strategic direction. Or it could be about how well the programme is performing.

It might also be looking at ethical and other governance concerns posed by research and development requests and considering them from different perspectives, for example; patient, service user, carer or specific communities.

What are the key duties and responsibilities for public members?

Each public member is expected to:

  • to review issues and contribute to the decision making or advisory process.
  • review the projects being proposed and 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.
  • have an awareness or interest in the issues covered by the work of Secure Data Environment from a patient or general public perspective.

What are the requirements to apply for the role?

Public members should be able to:

  • actively listen to others.
  • take part in the training provided.
  • share their views with healthcare and management colleagues at all levels, across a range of organisations.
  • ask questions about information provided.
  • access online documents and use basic IT skills to read and reply to emails.
  • represent the Secure Data Environment at other forums, meetings and events as requested and remunerated for.

For any questions about the role, please contact: necsu.digitalcare@nhs.net

Apply online before 5pm on 31 July 2023.

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