HPRA Patient Forum 

The HPRA Patient Forum is a platform for dialogue and exchange of topics relevant to patients regarding the regulation of medicines and medical devices.

The forum is based on a partnership approach to empower patients so their experience and perspectives are heard, acknowledged and actioned to bring about improvements in the regulation of health products.

The forum was established by the HPRA to give Irish patients a voice in the regulatory process, especially in areas of patient safety, licensing and use, and in how the Authority communicates with wider society

• To provide a mechanism for the exchange of information on issues of interest and facilitate engagement with patients in regulatory activities.
• To listen to, and understand, patients and representative organisations' views and consult them in the development of relevant policies, plans and activities.
• To incorporate the values and perspectives of patients into HPRA activities wherever possible and into the wider EU network. 
• To help optimise dialogue, communication and information exchange on health products and regulatory activities between the HPRA, patients and the public and vice versa.

The Terms of Reference for the forum sets out that, together with the HPRA, the forum members will prepare a rolling work plan, which includes areas of common interest to patients and the HPRA, and which is aligned with the purpose of the forum.

The work plan will be regularly reviewed, including progress against agreed actions, and updated as necessary.

The focus for 2024 is to continue to deepen the engagement between the HPRA and forum members. The forum will continue work on topics from the 2023 workplan and explore new topics identified as a priority.

The topics for the work plan were later agreed in March 2024:

• Continue to review the terms of reference concerning membership, including the diversity and inclusivity of the forum.
• Explore approaches to better enable forum members to access meeting information.
• Discuss with members how to raise public awareness of the availability of educational materials for specific medicines and seek feedback on how patient organisations could support this activity.
• Continue to engage with the forum on the redevelopment of the HPRA website and the patient speaker programme.
• Hold information sessions on how the HPRA is supporting development and innovation of medical devices, the current clinical trial landscape in Ireland, and the online sale of medicines.

Further details on each of these topics can be found in the forum's rolling workplan for 2024.

The forum contains a mix of patients (or carers, patient advocates) and patient organisations, which provides a balanced and wide range of experiences and perspectives.

In so far as possible, the forum will work to ensure representation from across a wide range of diseases and conditions, especially the main disease areas affecting many patients in Ireland, or where treatment depends on high demand or long-term use of medicines or medical devices. Where possible, the voices of underrepresented patient cohorts will be sought.

The following list outlines the members of the HPRA patient forum. 

• Jacqui Browne, Patient Representative

• Melody Buckley, Advocate, Ocular Melanoma Ireland & Public Member of University Limerick Hospital Group Patient Council

• Emma Harte, Policy Coordinator, Irish Cancer Society

• Karen Keely, Chairperson, Anticonvulsant Syndromes Ireland

• Dr Virginia Minogue PhD, Patient Representative

• Peter Murphy, CEO, Epilepsy Ireland

• Nuala Ryan, Chair, Board of Trustees, NCBRS Worldwide Foundation

• Gráinne O Leary, Chief Executive, Arthritis Ireland

• Ann Twomey, Director, The Alzheimer Society of Ireland

• Mandy Daly, Advocacy and Policymaking, Irish Neonatal Health Alliance

Further information on membership can be found in the Terms of Reference for the forum.

The forum meets four times per year. If feasible, certain topics of interest to the forum may be explored by way of separate workshops.

Membership is open to any patient or patient organisation that wishes to join and meets the agreed membership criteria.

Further information on these criteria can be found in the Terms of Reference for the forum.

Where necessary, numbers of attendees will be managed to ensure meetings remain effective.

If you have any questions in relation to membership, please contact patientforum@hpra.ie.

Further details on how the forum operates and its work plan for 2022 can be found on the pages below:

• Terms of Reference
• Rolling Work Plan 2023

If you would like any additional information, please contact patientforum@hpra.ie.