Call for Expressions of Interest for ‘Public, Patient and Carer Involvement’ (PPI) representative members

NATIONAL IRISH COVID-19 BIOBANK RESEARCH ETHICS COMMITTEE

Expressions of Interest should be completed by answering the questions of this form.

Call for Expressions of Interest for ‘Public, Patient and Carer Involvement’ (PPI) representative members for the National Irish COVID-19 Biobank-Research Ethics Committee

A dedicated ethics committee for the National Irish COVID-19 Biobank (NICB) is being established and Expressions of Interest are sought for PPI representative members. This ethics committee will ensure the safety, dignity and well-being of research participants is protected. 

The National Office for Research Ethics Committees is responsible for establishing National Research Ethics Committees (NRECs) in specific areas of health research. The NRECs strengthen the national research infrastructure to protect the safety, dignity and well-being of patients and the public, while creating a more conducive environment health research.

In direct response to the COVID-19 pandemic and the crucial need for COVID-19 research and innovation, the Department of Health has invested in the National Irish COVID-19 Biobank (NICB). The NICB is a national integrated biorepository of human biological samples with linked sociodemographic and clinical data provided by individuals with COVID-19. 

The NICB aims to enable a harmonised, shared platform for COVID-19 research that strengthens national research infrastructure and supports Irish and international research to address the challenges presented by COVID-19.

It is crucial that the collection, storage and use of COVID-19 biological samples and associated data is underpinned by the highest standards in ethics, governance and codes of practices. The use of the NICB for health and social care research purposes comes with a significant responsibility to protect the dignity, autonomy, and well-being of the individuals who gift their biological samples and data to the NICB, including the needs to safeguard their data protection and privacy rights.

The NICB-REC is an essential component of the national system of research ethics review in Ireland. It will ensure quality of ethics associated with the NICB as a biobanking infrastructure and a national asset. 

The mechanism of ethics review is through an ethics application submission process, which will enable the NICB-REC to review all relevant documentation in relation to the NICB. 

Committee meetings will be convened online/remotely every four to six weeks as determined by Chair and Committee members. Meetings are scheduled within business hours on a recurring day scheduled in advance and will typically be two hours in duration. 

Additional NICB-REC related work, such as preparation for the meetings and participation in training modules, can amount to approximately four to six per month.

NICB-REC meetings require a quorum for decisions and detailed minutes of meetings will be made publicly available.

The decision-making process of the NICB-REC will engender and sustain the trust of the research community and wider public.

Reasons to join the NICB Research Ethics Committee

  • Contribute to protecting the safety, dignity and well-being of research participants
  • Make a difference at a national level
  • Gain insight into forefront research
  • Enhance your professional & personal development

What does it mean to be a PPI Member of the NICB Research Ethics Committee?

The NICB-REC and the National Office supporting its work are committed to engaging with people from all walks of life in order to bring a valuable mix of experiences and viewpoints to the table when reviewing ethics applications. 

Many appointed Committee members are considered lay members, including members of the general public, and their opinions are given equal weight, in the decision-making process, to those of members with medical or other professional experience in ethics.

Expressions of Interest are invited from applicants inclusive of race, religion, ethnicity, gender, sexual orientation, responsibilities for dependents, age, disability, civil status, membership of the Traveller community, and geographic location.

Member selection will be based on a diversity of suitable skills, qualifications, interests, backgrounds and lived experiences required to deliver ethics decisions on the NICB application(s). 

Appointed members will receive training, access to the electronic tools necessary to conduct Committee work, and administrative support from the National Office team.

We do not expect PPI committee members to be in a position to comment on the scientific aspects of the NICB application(s).

Rather it is hoped that through lived experience and perspective as a member of the public they will be able to comment on whether the NICB processes are in the best interests of the patients involved.

Membership of the NICB-REC is an important and valued public service role. The National Office acknowledges and appreciates the time committed by each committee member. Details of appointed members, with permission, will be listed on the National Office website.

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NICB-REC Expression of Interest Form

Personal Details

Title*
Name*
Current position*

Relevant experience

Areas of lived experience

Under the current call, the National Office particularly welcomes Expressions of Interest from individuals with lived experience in the areas listed below. Please select areas of expertise relevant to you (you may select more than one):*

Brief CV / Career or work summary

Please attach or provide below a CV or summary (two-page maximum) of your career and work experience to date. Applicants may describe the chronology of their work experience in any capacity including work inside and outside the home (eg volunteering, community work).
Select at least one option*

Statement of motivation

Conflicts of Interest

It is acknowledged that NICB-REC members may have competing interests spanning their work inside and outside of the Committee. Where a competing interest is sufficiently serious to constitute a conflict of interest, namely where a primary interest (such as objective ethics review of a research study or research area) tends to be unduly influenced by a secondary interest (such as financial gain) independent judgement of the Member may be compromised. NICB-REC members will be invited to declare any competing interests, including conflicts of interest, in relation to the applications for review in advance of the Committee discussion.
Do you have any potential conflicts of interest or legal impediment that would likely interfere with your ability to play a full and proper role on an NICB-REC?*

Data Protection & Privacy Statement

The National Office for Research Ethics Committees fully respects your right to privacy. Any personal information that you provide to us will be treated with the highest standards of security and confidentiality, strictly in accordance with the General Data Protection Regulation and the Data Protection Act 2018. We may collect, use and disclose personal data provided in the Expression of Interest submission, or in connection with the submission, for the processing of the submission and its evaluation for Committee membership, including sharing the information securely with select third parties, such as the Department of Health, involved in the evaluation of the submission and the appointment of members. The National Office will act as the Data Controller and will retain this personal information for up to five years. With a view to ensuring that NREC decisions are informed by the diversity of skills, experience, interests and backgrounds reflective of Irish society, the National Office invites applicants to complete the Diversity & Inclusion information overleaf. If you choose to provide this personal information, it will be used to help the National Office evaluate its progress towards achieving diverse and inclusive NREC membership. This personal information will not be sent to third parties. We will also use the information you have provided to generate summary information and general statistics to describe and evaluate NREC membership. Further details regarding the National Office’s collection, use and disclosure of personal data, and the rights of individuals with respect to any personal data held by the National Office, are available in our Privacy Policy and Data Retention Policy.
Declaration*

Diversity & Inclusion Information (optional)

The National Office for Research Ethics Committees is an equal opportunity organisation. Your answers to the following questions will help us to evaluate our progress towards achieving diverse and inclusive NICB-REC membership.
How would you describe your gender?
Please indicate your age
Do you consider yourself to have a disability?
What is your ethnic or cultural background? The options below reflect the categories used by the Central Statistics Office. Please tick all that apply.
Asian or Asian Irish
Black or Black Irish
White
Other, including mixed background
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