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The Independent Group Advising on the Release of Data (IGARD) replaced the Data Access Advisory Group in 2017 and incorporated the data dissemination role of the General Practice Extraction Service (GPES) Independent Advisory Group (IAG). As per IGARD’s Terms of Reference (ToR), IGARD’s primary purpose will be to have oversight of all requests for dissemination of confidential information as defined in Section 263 of the Health and Social Care Act 2012, including:
• Personal data as defined in the General Data Protection Regulation (and in due course the Data Protection Act 2018);
• Personal Information as defined in the Statistics and Registration Services Act 2007;
• Data which is pseudonymised, anonymous in context or which is de-identified for limited access
• Data which is aggregated but which does not have small numbers suppressed
IGARD will also make general recommendations or observations to NHS Digital, via the SIRO, Caldicott Guardian, or other approved route, about NHS Digital’s processes, policies and procedures relating to data disseminations from NHS Digital, including transparency measures such as the data dissemination register, and produce IGARD’s annual report
The members and Chair of IGARD are all independent: that is they will not otherwise hold substantive employment contracts with NHS Digital.
Role of the IGARD Chair
The IGARD Chair will:
- Provide leadership to IGARD, making a leading contribution to its effectiveness across all aspects of its activity.
- Proactively lead and manage the development of IGARD in line with the IGARD Terms of Reference, and ensure that due process is followed and applied.
- Support members of IGARD in contributing fully and effectively to IGARD business.
- Support IGARD members’ professional development
- Liaise closely with the IGARD Secretariat to ensure the effective management of IGARD business
- Work and behave in a non-discriminatory way in all areas of IGARD’s activity.
- Work within the context of public sector transparency, respecting the Nolan Principles.
- Act in accordance with the IGARD Terms of Reference and Standard Operating
- Work constructively with the NHS Digital Caldicott Guardian and SIRO to maintain public confidence.
Qualities the IGARD Chair needs
The IGARD Chair will need to have:
- The ability to operate and influence at a senior level, commanding the respect and confidence of fellow IGARD members and stakeholders to help maintain public confidence.
- A strong commitment to improving the quality and safety of health and social care for the greater public good, and to the public service values of accountability, probity, openness and equality of opportunity.
- Excellent interpersonal and communication skills, including the ability to:
- present views effectively in a clear and straightforward manner,
- use tact and diplomacy when handling potentially sensitive issues.
- engage in informed debate about complex and sensitive issues,
- facilitate members to form a consensus.
- act as an effective channel to resolve issues both within IGARD and with NHS Digital
- Clarity of thought and ability to analyse complex information and to make impartial judgments and put forward appropriate solutions.
- The ability to act independently, be accountable for his or her own actions, and hold others to account.
- The ability to effectively chair formal meetings in line with its Terms of Reference
- An understanding of the health and care sector.
- In addition, the IGARD chair should already have or be willing to develop:
- An understanding of clinical or health service research processes;
- An understanding of the application of the duty of confidentiality and data protection legislation to health and care data.
- Knowledge of information governance and research processes.
Requirements of all members
All members of the IGARD will:
- work within the context of public sector transparency, respecting the Nolan Principles;
- act independently and not represent their employing organisations, professional bodies or other groups or organisations;
- be expected to attend at least 50% of (weekly) IGARD meetings throughout the year in either Leeds or London unless otherwise agreed with the Chair;
- receive electronic copies of IGARD agendas & papers using own computer and NHS Digital email account;
- prepare for meetings by reading IGARD papers before meetings;
- play an active role at meetings, contributing questions and perspective through the Chair;
- to provide active contribution to out of committee review of applications, as required between meetings.;
- maintain confidence and respect confidentiality policies;
- respect the decisions of IGARD;
- act in accordance with the IGARD Terms of Reference and Standard Operating Procedures.
On joining IGARD, all members will need to have:
- a strong commitment to public service;
- excellent communication skills;
- the ability to inspire trust in, negotiate with, and influence others;
- an open and enquiring mind with a strong facility for critical thinking;
- the ability to consider a wide range of technical, ethical and policy information in an analytical manner, and to focus on key areas of importance without losing track of the bigger picture;
- the ability to effectively participate in a multi-disciplinary forum that includes lawyers, medical practitioners, academics, and NHS Digital specialists.
In addition, members should already have, or be willing to develop, an understanding of:
- clinical or health service research processes;
- the application of the duty of confidentiality and data protection legislation to health and care data.
IGARD membership will include people with relevant skills, and those with experience in senior positions of the use of confidential data.
The range of skills and experience from which IGARD could benefit includes, but is not restricted to:
- Experience of the data needs of the health and care research community.
- Experience of epidemiological and population-based research.
- Experience of the data needs of public health or social care.
- Experience of the data needs of commissioners or providers.
- Experience as a medical practitioner, including general practice.
- Experience as an organisational Caldicott Guardian.
- Experience within a research funding or charitable organisation.
- Legal qualifications and experience.
- Research ethics or medical ethics experience.
Lay members do not need a qualification in law, academic research, medicine or professions allied to medicine, or a background working for an organisation within the health and care service, but will need:
- a willingness to familiarise yourself with a basic working knowledge of health services, the duty of confidentiality, relevant law, and the use of health information;
- Experience as a patient, participant in a research study, carer or service user