The ENACt project, led by the Royal College of Surgeons in Ireland and funded by the Health Research Board, established a Patient Advisory Panel in 2020 to ensure a patient perspective throughout the design, implementation and evaluation of the research study. A call for panel members was circulated among RCSI’s professional network, and expressions of interest were sought from patient organisations and groups in contact with oestoarthritis patients. The Patient Advisory Board members first met in August 2021, and they will continue to meet bi-annually until 2024.

The Patient and Family Experience Advisory Council was established in May 2019 and patient experience advisors are recruited to sit on a number of hospital committees. The MUH Patient Information Booklet was developed in collaboration with the patient experience advisors. Staff education on engaging with patients and families is mandatory, and the training is developed and delivered collaboratively with patient experience advisors. The Mayo Hospital is a member of the Saolta Hospital Group. The Saolta Patient and Public Engagement Strategy 2020-2023 is available here.

The Roscommon University Hospital (RUH) Patient Council comprises of between 7 and 10 representatives. The Council meets with hospital management every two months. Patient Council representatives are appointed following a public advertisement process. Patient Council representatives contribute to a variety of projects and policies. For example, in response to feedback from a 2018 National Patient Experience Survey, Roscommon University Hospital introduced a number of new initiatives to enhance the patients’ experience at the hospital. These initiatives included a new  27-page Patient Information Booklet, a Patient Folder, and a Patient Comfort Pack – all the documents were developed in collaboration with the Roscommon University Hospital Patient Council with input from patients and staff.

The ‘Rheumatoid Arthritis Patient Awareness Initiative (PA-PAIN)’ research study co-facilitated a series of eight half-day workshops. Patient representatives, together with researchers and clinicians, helped to prioritise key research themes for patients with rheumatoid arthritis. Patient representatives also supported the design a survey which invited patients to share their understanding of their diagnosis and the routine diagnostics tests used in the clinical setting, as well as other topics including medicine adherence, disease flare, pregnancy and their attitudes to research studies. A patient directed symposium was organised in May 2020 in response to the research study findings, with the involvement of the TCD research study team, Arthritis Ireland and the Health Research Board.

The HSE Board was established in 2019 to oversee the governance of the Health Service Executive (HSE). The Board members support a number of key priorities including: Developing and implementing an effective Corporate Governance Framework, incorporating clinical governance, and a performance management and accountability system. Developing a plan for building public trust and confidence in the HSE and the wider Health Service. Ensuring the HSE’s full support for and implementation of the Government’s programme of health reform as set out in the Slaintecare Implementation Strategy. For 2019, exercising effective budgetary management, including improving the value achieved with existing resources and securing target saving, with the objective of delivering the National Service Plan within Budget. The HSE Board comprises of 12 members, including two public and/or patient represenatives. The PPI representatives were appointed by the Minister for Health following a national public appointments process.

The HSE Board is supported by four HSE Board Committees: Audit and Risk, Safety and Quality, People and Culture, Performance and Delivery which were established in 2019. The HSE Board Committees comprise of Board members and non-Board members, including at least one public and/or patient representative on each Committee. The PPI representatives were identified from the HSE professional network of contacts. The Committees work to agreed terms of reference.

There are four Regional Health Groups: West, South, Dublin Mid Leinster and Dublin North East. The Forum includes public office representatives from the city and county councils within that area. The Fora make representations to the HSE on the range and operation of health and personal social services in their area, and the HSE in turn provides administrative services to the Forum. One of the functions of the HSE’s Regional Offices is to ensure that appropriate administrative support is provided for the operation of the Regional Health Fora.

The HSE Technical Review Committee for Rare Diseases is the national committee, established by the HSE in 2018, to make recommendations on clinical issues around the reimbursement of a medicine. The aim of the Committee is to ensure that the perspective of patients and clinicians inform the final recommendation on pricing and reimbursement made by the HSE Drugs Group to the HSE Senior Management. The Committee meets at the request of the HSE Drugs Group. In 2020 no requests were received by the Committee until August when a request was received from the HSE Drugs Group to advise on two medicines. The HSE Technical Review Committee for Rare Diseases comprises of 13 members, including two patient representatives. Other members include the chair, the clinical lead for the HSE Rare Disease Programme, five consultants with rare disease expertise, two pharmacits, one health technology assessor and one representative from the Health Information and Quality Authority (HIQA). The patient representatives were appointed by patient umbrella organisations with an interest in rare diseases following an election process.

The Strategic Advisory Forum (SAF) established in February 2019 is a non-statutory forum appointed by the Minister for Health to provide strategic advice through the National Patient Safety Office (NPSO) on the establishment, development, evolution, performance and monitoring of the Patient Advocacy Service (PAS). The Forum provided input on the PAS code of conduct, and access and eligibility policy. The Strategic Advisory Forum (SAF) comprises of eight members, of which two are public representatives. The Forum met three times in 2019.

The Independent Patient Safety Council was appointed by the Minister for Health and it held its inaugural meeting on 27 January 2020 In 2021, the Council presented the Minister with recommendations on a National Policy Framework for Open Disclosure in Healthcare in Ireland, to assist organisations and clinicians to apply the principles of open disclosure to communicate with patients when healthcare does not go to plan. These recommendations were informed by the findings of a national survey which was launched in April 2020. The Independent Patient Safety Council comprises of 16 members, of which who are public and/or patient representatives. The Council members are appointed by the Minister for their expertise and experience and each member shares a different perspective.

The National Research Ethics Committees (NREC) for Medical Devices (NREC-MD) was established by the Office of National Research Ethics Committees (NREC) in 2021. The aim of NREC-MD is to review ethics applications for clinical trial studies on medical devices. The work of the Committee supports the implementation of the European Medical Device Regulation. The Committees met 7 times from May-December 2020. The National Research Ethics Committees (NREC) for Medical Devices (NREC-MD) comprises of 18 members, including five public representatives of which one is a patient representative. Public and/or patient representatives were appointed by the Minister for Health following expressions of interest received from a public advertisement process. Representatives work to an agreed terms of reference which includes a description of their role.

The Patient Voice in Arthritis Research is a initiative to actively engage arthritis patients, arthritis researchers and other interested parties (patient advocates, families, carers, healthcare professionals, policy-makers and those with an interest in arthritis research) in discussions and decision-making processes, which positively impact on arthritis research and outcomes for patients. The Patient Voice in Arthritis Research initiative is currently working with a variety of patient partners on projects to include the experience of young people and children living with arthritis in research priorities, and to raise awareness about rare and chronic conditions. The initiative also works with patient partners to prepare and submit co-designed proposals for various research funding applications. The initiative co-produces a quarterly newsletter with patients and researchers in which each edition focuses on a specific theme. The newsletter was created in response to feedback from patient insight partners at the first Patient Voice in Arthritis Research discussion forum in 2017. The UCD Centre for Arthritis Research Steering Committee which oversees the Patient Voice in Arthritis Research initiative comprises of 10 members, including three patient representatives. Each patient representative represents a specific disease area: inflammatory arthritis, degenerative arthritis and rare disease and paediatric (child and adolescent) rheumatology.

The HTA Prioritisation Advisory Group has been established to support HIQA in fulfilling its statutory function to conduct health technology assessments (HTAs) to inform investment (and potentially disinvestment) decisions by the Minister for Health and by the HSE. The number of requests for HTAs outweighs the resources available within HIQA to conduct them. As such, the HTA Prioritisation Advisory Group is tasked with advising on the relative priority of HTA requests received from the Minister and the HSE which informs HIQA’s work planning for 2021-2022. The advisory group first met in June 2021 to review and prioritise the HTA requests according to a number of criteria which include clinical impact, economic impact and policy impact. The HTA Prioritisation Advisory Group comprises of six members, including two public and/or patient representatives, two Department of Health representatives and two HSE representatives. The PPI representatives were identified based on expressions of interest received from the HSE National Patients’ Forum.

The National Cancer Registry Board comprises of seven members, including two public and/or patient representatives (one member of the public and one patient organisation representative). The Board meets quarterly.

The Irish Centre for High End Computing (hosted at NUI Galway) invited two public and/or patient representatives to join the Advisory Committee overseeing the DASSL Linked Health Data Research Project. The PPI representatives provide a public and patient perspective on how to provide safe access to health data and how to develop ways to share or link existing data responsibly for the benefit of people’s health and patient care. The PPI representatives took up their responsibility from August 2020 to November 2021. One representatives is a member of the public, the other is a patient. The patient representative was identified by a patient organisation. A description of the role was provided to the PPI representatives.

The Irish Society of Gynaecological Oncology (ISGO) Public and Patient Involvement Group was established in 2016 to build a partnership between the society (clinicians, nurses, scientists) and patients and members of the public. The public and patient involvement (PPI) members have co-authored a publication on patient-doctor communication, co-designed an all-Ireland research study, contributed to National Committees involved in clinical guideline development, and represented Irish patients at the European Society for Gynaecological Oncology. The ISGO PPI Group launched an annual Laura Brennan Award for patient advocacy in 2018 to honour the work of inspiring patient advocates. The PPI Group meets three or four times a year. The PPI Group membership is open to all with an interest in gynaecological cancers. The PPI Group works to agreed terms of reference.

The PPI in Research Committee was established in 2020 with the goal of improving Public Patient Involvement (PPI) in research conducted through RCSI Medical Sciences and Healthcare University. The aim of the the Committee is to ensure that patient needs, expertise and preferences inform research at RCSI University across all research stages and types, including pre-clinical, translational and clinical research. Learning from the RCSI PPI in Research initiative will also inform the Irish National PPI Ignite Network, the Health Research Board as well as RCSI’s international healthcare research partners. The Committee has already developed a PPI Reimbursement Guidance document which has been approved of by RCSI Finance Office. The Committee has now been tasked to co-produce a PPI strategy for RCSI in collaboration with PPI stakeholders and progress on this will be reported to the Senior Management Team in RCSI University.The Committee meets on a monthly basis. The PPI in Research Committee is an interdisciplinary, multi-stakeholder group comprising of 13 members. There are two public and/or patient involvement representatives, two research support staff, three clinician scientists, and five academic healthcare researchers. All of the public and/or patient representatives were appointed from the RCSI professional network of healthcare research contacts due […]

Facilitated by Clinical Research Development Ireland, the National Biobanking Working Group (NBWG) was established in January 2019 to address concerns nationally that researchers had in terms of consent and the use of patients’ samples and data specifically for research purposes. The working group comprised of ten members, including one patient representative. A key objective of the group is to develop a national Patient Information Leaflet (PIL) and Informed Consent Form (ICF) template that is clear and easy to understand by public and patients while also compliant with data protection regulations. The patient representative on the working group provided input into the group’s activities including flyers to explain the process of biobanking to patients and members of the public, as well as workshops between patients and researchers to explore the different perspectives on issues relevant to biobanking and health research. The patient representative was selected following a public advertisement process as well as nominations provided by patient organisations.

The Trinity Biomedical Sciences Institute (TBSI) organised a national workshop in January 2020 for patients for over 20 patients with specific conditions to co-author patient and public information material. The aim of the workshop was to involve patients in the design and development of the material to ensure that the material benefitted from a full understanding of the disease diagnosis and treatment pathway. The workshop allowed patients to interact with clinicians and scientists, and several patients and researchers continued their involvement and wrote grant proposals together. The PPI representatives were identified by public advertisement notice and by patient organisations representing patients with specific conditions. Representatives selected were all individuals with a specific condition. A description of the role was provided to the PPI representatives.

The TCD Institute of Population Health at Trinity College Dublin organised a one-day event in February 2019 to invite individuals with experience of autism to share their perspectives with researchers with an interest in autism genomics. The patient representatives were selected from professional networks and from nominations provided by the patient organisation relevant to this condition. The representatives were provided with a description of the role.

The Patient Voice in Cancer Research (PVCR) is an initiative to actively engage cancer patients, cancer researchers and other interested parties (patient advocates, families, carers, healthcare professionals, policy-makers and those with an interest in cancer research) in discussions and decision making processes, which positively impact on cancer research and outcomes for patients. In 2020, the Patient Voice in Cancer Research initiative helped 13 research groups work with public and/or patient representatives to shape their research proposals and communications. The patient representatives involved in the Patient Voice in Cancer Research (PVCR) initiatives are selected from the PVCR professional network and from nominations provided by various cancer patient organisations. The representatives are provided with a description of their role, where possible.

The Patient Voice in Cancer Research (PVCR) initiative within the Conway Institute of Biomolecular and Biomedical Research at University College Dublin organised a one-day event in February 2020 to explore an innovative new approach to public and/or patient involvement. Using a ‘dragons den’ model, public and/or patient representatives invited ten research groups to pitch their proposals for tackling a particular research question or challenge. A panel of seven patients, family members, carers and patient advocates acted as ‘friendly dragons’, quizzing the researchers about various aspects of their proposals and giving the researchers invaluable insights as individuals with lived experience. Proposals presented included developing an eHealth online portal to alleviate the information deficit experienced by cancer patients and survivors; gaining feedback on a home-based device for fluid management in late-stage cancer, and improving awareness of cancer associated thrombosis. The patient representatives were selected from nominations provided by the patient organisation relevant to this condition. The representatives were provided with a description of the role.

The School of Biomolecular and Biomedical Science at University College Dublin, in collaboration with Fighting Blindness, organised a focus group with five public and/or patient representatives (four of which were patients) on January 2019. The event provided an opportunity for researchers and public and/or patient involvement representatives to explore public and patient involvement opportunities available within current research.

The School of Biomolecular and Biomedical Science at University College Dublin organised a focus group with three public and/or patient representatives (two of which were patients) on January 2019. The focus group participants were all selected for their interest in uveal melanoma. The event provided an opportunity for researchers and public and/or patient involvement representatives to explore public and patient involvement opportunities available within current research.

The NCEC was established in 2010, and public and/or patient (PPI) representatives are listed among its members in its first annual report published in 2013. The Committee meets quarterly, and as required. The work of NCEC is ongoing. The National Clinical Effectiveness Committee (NCEC) comprises of 20 members, including two public and/or patient (PPI) representatives (both patients). The PPI representatives are appointed by the Minister for Health. PPI representatives do not need any formal qualification nor do they need to be affiliated to a patient organisation. They should be willing to share the broader patient perspective rather than their own personal opinion. They should not have practiced as a healthcare professional for more than five years. The term is from three to five years. Members can serve a maximum of two terms. PPI representatives have been on the Committee since 2013.

The Saolta Hospitals Group Patient Council was established in 2014 to enable patients and their relatives to become active partners in the Saolta Hospitals Group. The Saolta Hospitals Group Patient Council comprises of 17 members, all public and/or patient (PPI) representatives. Public and/or patient representatives were appointed following a public advertisement process. Over 100 expressions of interest were received.The Patient Council is led by a patient chair and vice-chair, who are elected by the council members. The Council meets every two months, and it reports to the Saolta Hospitals Group Board.  The aim of the Patient Council is to work with the Saolta University Hospital Group to identify current and future opportunities to improve the care experience for patients, families and caregivers and to do so by building a formal and structured partnership between the Patient Council and Saolta so as to better identify and incorporate the patient’s perspective in the activities and planning of Saolta. The Council serves in an advisory capacity, making recommendations which will endeavor to embed the patient voice throughout the organisation and for that voice to be incorporated in organisational activities. In 2019, the Saolta Group also recently invited two public and/or patient representatives to […]

The UL Hospitals Group Patient Council was established in 2016. The Council enables patients and family members to become active partners in the UL Hospitals Group, and to advise on ways to improve the experience of patients and/or families using any of the Group’s six hospitals. There are six regular meetings annually. However, Council members are also involved in various committees and projects meetings across the Hospitals Group, such as work on the new Emergency Department at University Hospital Limerick, as well as work in the areas of end-of-life care, clinical ethics, nutrition, signage, and patient flow. Council members are also involved in supporting the flu vaccination programme within the Hospitals Group and in other patient communication initiatives. The Patient Council sponsor an Award which is dedicated each year to an individual which has made a unique commitment to patient advocacy. The Patient Council reports to the Quality Improvement Committee within the UL Hospitals Group. The UL Hospitals Group Patient Council comprises 19 members, of which 11 are public and/or patient (PPI) representatives and 8 are hospital representatives. The PPI representatives are appointed based on expressions of interest received to a local public advertisement process and following an interview with […]

The Your Voice Matters team within the Office of the Chief Clinical Officer invited 12 public and/or patient representatives to support the development of a survey for the Quit and Stay Quit Programme. PPI representatives worked on the survey from August 2020 to March 2021.

The Genuity Science established a Strategic Advisory Board in 2019 and Participant Advisory Board (PAB) in 2020. The Boards provide public and/or patient representatives with an interest in genomics research and genomic data the opportunity to provide their input into the company’s work. The company benefits from their valuable insights, and it uses these to shape its approaches and practices. The Strategic Advisory Board comprises of six members, including one patient representative. The Board members work to an agreed terms of reference and a description of the Board member role is included. The Participant Advisory Board (PAB) comprises of ten members, all are patient representatives. The Board members were identified on the basis of expressions of interest received to a public advertisement process. The Board members work to an agreed terms of reference and a description of the Board member role is included.

The Gutcast project started in December 2019, with the aim of creating a podcast series to educate and inform about the health issues facing people living with Crohn’s Disease or Colitis in Ireland. The intiative represents a partnership between Janssen, healthcare professionals, and the Irish Society for Colitis and Crohn’s Disease (ISCC) who worked together to create the concept and to identify content for the podcast episodes. Eight episodes were aired between July-August 2020.

Croí, the Heart & Stroke Charity, offered a number of different opportunities to public and/or patient involvement representatives throughout 2020. An Adherence to Cardiac Rehab in Community Setting Research Study established an Advisory Committee of 10 patient representatives to guide the research process. All patient representatives were nominated by patient organisations. Croi Health Programme Development (eg: Heartlink West) invited 8 representatives, of which six were patients, to participate in a focus group. Patient were selected following a public advertisement process and nominations were made by patient organisations. A Covid-19 Hypertension Research Study offered 10 representatives, of which seven were patients, the opportunity to become co-researchers in a study of hypertension and COVID-19. The representatives were nominated by patient organisations.

The Worldwide Cystinosis Patient Community Advisory Boards (CABs) is supported by the EURORDIS EUROCAB Programme which assists patient organisations in setting up the CAB and offers guidance on common principles and tools for engagement, including capacity building. The CAB provides expert advice to those engaging in clinical research in the disease area, such as a pharmaceutical or biotechnology company, hospital or university research team. The CAB patient advocates offer their expertise by being involved before a clinical study starts and ensuring that clinical studies are designed to take into account their real needs, resulting in higher quality research. CAB members offer their expertise in how the clinical trial is run, how the patients will be able to best adhere to protocols, or how to ensure continued access to the medication after the study ends. The Worldwide Cystinosis Patient Community Advisory Boards (CABs) members include people living with cystinosis, close family members or carers, and/or members of patient organisations. The Worldwide Cystinosis CAB has 12-15 members at any one time. Members work to an agreed terms of reference.

D1 Now is a project that aims to improve outcomes for young adults living with type 1 diabetes (T1D). The D1 Now project established a Young Adult Panel (YAP) in 2014. The research team, in collaboration with Jigsaw (the National Centre for Youth Mental Health), invited young adults to an open consultation event. Letters were sent to young adults aged between 18-25 years old attending the diabetes service in Galway in conjunction with a social media campaign using Twitter and Facebook. This letter asked young adults to attend the consultation event in Jigsaw if they were interested in getting involved as co-researchers with the D1 Now Study team. It explained that research carried out would be ‘with’ and ‘by’ members of the YAP rather than ‘to’, ‘about’ and ‘for’ them. Eight young adults went on to form the initial YAP. Since then, some of these young adults have moved on, having given huge contributions during their time. The research team ran recruitment for the YAP again in 2018 and in 2020 and the YAP currently has nine members. The work of the YAP is ongoing. The YAP have been involved in every aspect of the D1 Now study since the […]

The Diabetes in General Practice College at University College Cork offered a number of different opportunities to public and/or patient involvement representatives. A patient organisation representative (from Diabetes Ireland) was invited to sit on the Cork Kerry Local Implementation Governance Group for Chronic Disease and Diabetes Subgroup during 2019 (five meetings). A patient organisation representative also sat on a working group established to support the implementation of the Slaintecare project which sought to pilot the Type 2 Diabetes Model of Integrated Care in two Community Healthcare Network sites in late 2020. Finally, patient representatives also volunteered to help train clinicians on how to do a foot examination for diabetes patients. All the patient representatives were identified by the patient organisation. Representatives were provided with a description of the role and terms of reference.

The project to engage the public on the collection, use and sharing of health information started in 2019 and concluded in June 2021 and it involved public and/or patient representatives at various stages across its lifecycle in order to gain a broad understanding of the opinions and attitudes of people living in Ireland in relation to the collection, use and sharing of their health information. The project Advisory Group involved three patient and/or public (PPI) representatives, who all provided input into the early planning and design of the national survey. 1200 members of the public were invited to respond to a telephone survey which explored their views around a number of scenarios detailing potential examples of how health information could be accessed, used and shared in the future. A further 36 members of patient organisations, and 36 members of the public were invited to participate in focus groups where issues around health information access, use and sharing were explored in more detail.

The Health Information and Quality Authority (HIQA) is involving public and/or patient (PPI) representatives in the development of its National Standards for Children’s Social Services. Its aim is to gain insights from people using services as to what are the key issues that standards or guidance should address, and to seek feedback on draft documents to ensure they will improve the experience of people using health and social care services. The patient and/or public (PPI) representatives share important opinions and views throughout the project. The National Standards for Children’s Social Services Advisory Group includes 21 public and/or patient (PPI) representatives, including two with experience of accessing services and three children and/or family representatives. The National Standards for Children’s Social Services project also included extensive consultation with the public. The public scoping consultation reached 53 members of the public, including four service users, and the focus groups and engagement sessions engaged 285 members of the public, including 45 service users.

The expert advisory group for this health technology assessment (HTA) was established to assess the clinical and economic impact of providing C-reactive protein point-of-care testing to inform the prescribing of antibiotics for patients presenting with symptoms of acute respiratory tract infections (RTIs) in primary care. The public and/or patient (PPI) representatives were involved in supporting HIQA to fulfil its health technology assessment function. All expert advisory group members provided input into the process (for example, forming the terms of reference, drafting key considerations in the report, interpreting research findings) and they also provide peer review of the project report. The public and/or patient representatives were engaged from July 2018 to May 2019. The expert advisory group met twice during this period. The expert advisory group for health technology assessment (HTA) of C-reactive protein point-of-care testing to guide antibiotic prescribing comprised of 18 members, including two patient and/or public (PPI) representatives. The PPI representative were identified by a relevant stakeholder organisation, who nominated a representative to participate in the expert advisory group for the duration of the project. There was no specific eligibility criteria. The expert advisory group members were provided with draft written terms of reference for their role, and […]

The expert advisory group for this health technology assessment (HTA) was established to assess the clinical and economic impact of a pre-exposure prophylaxis (PrEP) programme for populations at substantial risk of sexual acquisition of HIV. The public and/or patient (PPI) representatives were involved in supporting HIQA to fulfil its health technology assessment function. All expert advisory group members provided input into the process (for example, forming the terms of reference, drafting key considerations in the report, interpreting research findings) and they also provide peer review of the project report. The public and/or patient representatives were engaged from September 2018 to June 2019. The expert advisory group met twice during this period. The HIQA expert advisory group for HTA of a pre-exposure prophylaxis (PrEP) programme for populations at substantial risk of sexual acquisition of HIV comprises of 14 members, including two patient and/or public representatives. The PPI representative was identified by a relevant stakeholder organisation, who nominated a representative to participate in an expert advisory group for the duration of the project. There was no specific eligibility criteria. The expert advisory group members were provided with draft written terms of reference for their role, and they were involved in finalisation process.

The Health Research Board (HRB) involves public reviewers in the process of reviewing applications for funding to various HRB schemes. In 2019, public reviewers were invited to share their feedback on applications made to two post-doctoral fellowship award schemes operated by the HRB: 1) the Applying Research into Policy & Practice (ARPP) and 2) the Clinical Scientist Fellowship (CSF). For each application, two public reviewers are involved. Reviewers complete a short assessment report to share their views with the HRB. The report is then anonymised and shared with the research applicant who is encouraged to improve their research proposal based on the reviewer input. Reviewers give feedback on whether the proposal is understandable (plain English), whether the research is relevant to the public, whether the public and/or patients are involved in the research, and how the research findings are publicly disseminated. Public review reports are now also shared with the decision-making panel within the HRB who decides which research applications receive funding. Since 2014, the HRB has required that research applications specifically detail how and when they intend to involve the public and/or patients in their studies. An evaluation of the pilot public review approach was completed in 2017. The […]

The Health Research Board (HRB) involved two public reviewers in allocating funding under the HRB-HRCI joint scheme. The public reviewers were engaged from May-June 2020. The four public reviewers were selected from the Health Research Board’s professional network of contacts. Reviewers worked to agreed terms of reference including a description of their role.

The Irish National Audit of Stroke (INAS) Governance Committee was established in 2019. It comprises of 17 members, of which two are public and/or patient (PPI) representatives. The role of the public and/or patient (PPI) representatives is equal to that of all other Committee members. The PPI representatives are recruited in line with the NOCA Patient and Public Involvement Framework Policy. The term for Committee members runs for three years. The Committee collects and reviews health data to complete a clinically-led audit of treatment pathways, care standards, and patient outcomes. The PPI representatives contribute to conversations about governance, audit reporting and more. Annually, the INAS reviews its own performance and reports to the NOCA Governance Board. A first INAS report was published in December 2020. T The Committee meets quarterly, and as required.

The National ICU Audit (INICUA) Governance Committee was established in 2013. The Committee collects and reviews health data to complete clinically-led audit of patient care and outcomes in adult and paediatric ICUs. The PPI representatives contribute to conversations about governance, audit reporting and more. An interim report was published in December 2020. The role of the public and/or patient (PPI) representatives is equal to that of all other Committee members. The Committee meets quarterly, and as required. The National ICU Audit (INICUA) Governance Committee comprises of 16 members, of which two are public and/or patient (PPI) representatives. The PPI representatives are recruited in line with the NOCA Patient and Public Involvement Framework. The term for Committee members runs for three years.

The Health Research Consent Declaration Committee (HRCDC) was established as part of the Health Research Regulations under the Data Protection Act of 2018. The purpose of these regulations is to support health research and promote necessary and desirable public confidence in such research. The inclusion of public and/or patient (PPI) representatives seeks to ensure that all decisions made by the HRCDC regarding the use of personal data for health research, where consent cannot be obtained, are made taking the perspectives of the public and patients into consideration. An amendment to the Health Research Regulations was made in January 2021 to specifically include reference to researchers consulting with ‘patients and public’ on research. The role of PPI members on the HRCDC is equal to that of all other Committee members. All members of the HRCDC have their own skills and experiences that they draw upon to contribute to the consensus-based decisions of the HRCDC, as required under the Health Research Regulations. The PPI representatives attend Committee meetings either in person, or more recently online, and they also complete a considerable amount of pre-meeting reading. The HRCDC Standard Operating Procedures set out that at least one PPI member must be in attendance […]