The Irish Health Research Forum was established and is managed by Health Research Charities Ireland (HRCI) and is guided by a diverse and high-level Steering Group. It was first founded on foot of a major HRCI report ‘The Health Research Landscape in Ireland: What Researchers Say’, published in May 2014. Since its inception it has run events and produced materials on many important topics in health research in Ireland.

Purpose and approach of the Irish Health Research Forum

The Irish Health Research Forum aims to positively influence health research in Ireland by bringing together all stakeholders to address issues and topics of interest and by making recommendations to ultimately benefit patients and the public. The Irish Health Research Forum holds twice annual events to achieve this aim and endeavours to include a diverse range of attendees who bring relevant perspectives to inform each event. It has a particular focus on ensuring the inclusion of patient representatives. Outputs from the Forum are varied but comprise meeting reports, recommendations, discussion papers etc.

The overall approach of the Irish Health Research Forum is forward-looking, constructive, evidence-based, strategic and inclusive.

Role of the Steering Group

The role of the Steering Group is to:

• Determine the themes to address at Irish Health Research Forum events
• Advise on event speakers and attendees
• Review Forum documentation
• Help to develop Forum recommendations
• Advise HRCI on the wider health research environment, as it relates to Irish Health Research Forum activities
• Act as an ambassador for the Forum

Membership of the Steering Group

The Irish Health Research Forum Steering Group is comprised of individuals representing organisations or cohorts that have an interest in health research in Ireland. Membership is drawn from a broad range of stakeholders including, health research bodies, charities, patient representatives, funders, policy makers etc.

• There can be up to 20 members of the Steering Group, including the Forum Chair.
• Membership of the Group should include two HRCI member representatives, the HRCI Chair and the HRCI CEO. One of the HRCI representatives will report on Steering Group meetings (excluding confidential discussions) at HRCI Board meetings.
• In addition to HRCI members (who may be patient representatives) the group should include one patient and one member of the public. If not working in a role which can encompass Steering Group commitments, these members will be paid a small fee to compensate for their time, in addition to having any expenses relating to Irish Health Research Forum activities covered.
• The organisation or cohort that members represent is included in materials on the Steering Group.
• Members are usually proposed by the Steering Group but can be added to upon external request and with agreement of the Steering Group.
• Steering Group members are encouraged to send a proxy to meetings if they are unable to attend but should alert HRCI in advance.
• Membership of the Steering Group is for a three-year term. If, at the end of this term, they are willing, they can be confirmed by the Steering Group for one further term. Terms will begin in January 2021. Individuals representing organisations are encouraged to report back on Irish Health Research Forum activities to their organisations.
• At the end of their term, members who represent organisations may wish to recommend someone else from their organisation for membership of the Steering Group.
• Steering Group members may request ‘observer’ status, rather than full membership, at the request of their organisation, if required.
• HRCI will include an opportunity in meeting agendas for members in attendance to declare any conflict of interest.
• The Steering Group will review the membership once every two years and take any action required to ensure an inclusive and engaged group.

Irish Health Research Forum Chairperson

The Forum Chairperson should be someone highly informed about health research in Ireland and widely respected among the health research community. Their role will be to Chair meetings of the Steering Group, Chair Irish Health Research Forum events and to guide HRCI in the management of the Forum. They should be willing and able to dedicate time to these activities.

• The Chair of the group will be appointed by the HRCI Board of Directors and approved by the Steering Group.
• If the Chair is unable to attend a meeting, they should request another member of the Steering Group to act as the Chair in their absence.
• The term for a Chairperson will be three years from the date of their appointment. If, at the end of this term, she or he is willing, they can be re-elected by the Steering Group for a further term.

Steering Group Meetings

• The Steering Group aims to meet quarterly.
• The duration of the meetings is 1.5 – 2 hours.
• The meetings are held in the HRCI offices, in the offices of another member of the Steering Group or remotely when necessary.
• Members of the Steering Group are asked to commit to regular attendance at meetings. Failure to attend 3 or more consecutive meetings is cause for a discussion with the Chair or HRCI regarding the ability of the member to commit to the Group going forward.
• Attendance in person is preferable but a remote attendance option can be provided when this is not possible.
• An agenda, brief minutes of the previous meeting and any other relevant papers are provided to the Steering Group, ideally a minimum of five days in advance of meetings.
• All Steering Group members are welcome to suggest agenda items.
• In the event of decisions or discussion being required outside of a Steering Group meeting, this may take place by e-mail.

Role of HRCI

HRCI plays a varied and on-going role in managing the Irish Health Research Forum. Among its duties are to:

• Manage all aspects of Steering Group meetings including the preparation and dissemination of meeting papers.
• Action meeting decisions, in consultation with the Chair where required.
• Liaise with the Chair as required.
• Lead on Irish Health Research Forum event management, including the shaping of event agendas, communicating with speakers, inviting and managing attendees and all logistical elements.
• Maintain the Forum mailing list.
• Lead on the development, design and dissemination of Forum documents and materials.
• Manage Irish Health Research Forum communications, including website and social media (managed through HRCI channels).
• Seek continued funding to maintain the Irish Health Research Forum and report on its activities to funders.

Irish Health Research Forum funding

The Irish Health Research Forum has been funded since its inception by Health Research Charities Ireland. Funding is provided via a HRCI Pobal grant for a HRCI Events and Communications Coordinator, part of whose role is to support the Forum.

Time dedicated to the Irish Health Research Forum by the HRCI CEO and other staff members, along with website, room- hire, PPI and all other logistical costs are supported by HRCI budgets.

HRCI charges attendees at in-person events, with the exception of Steering Group and HRCI members, to offset some of the events’ costs.

Reviewing the terms of reference

These terms of reference will be reviewed by the Steering Group every two years.

Ethos of the Steering Group

• Some discussions at Steering Group meetings are sensitive and the Steering Group members should keep these confidential.
• Steering Group members should aim to represent not just their organisation or cohort but to consider the broader needs of Irish patients and the public.
• All Steering Group members should be given equal opportunity to have their voice heard and considered.
• Members should show commitment to the Steering Group and make every effort to attend meetings. When time permits, they should be willing to take on tasks and leadership roles on issues of expertise.
• Members should act respectfully to one another and avoid both giving and taking offence. They should be willing to challenge poor behaviour by other Steering Group members should it occur.