What is the 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.
Why was it established?
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
What are the objectives of the forum?
The objectives of the forum are:
- 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.
How does it work?
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.
What are the current areas or topics that the forum are working on?
The focus for 2023 is to continue to deepen the engagement between the HPRA and forum members. The forum will continue work on topics from the 2022 workplan and explore new topics identified as a priority.
The forum members were consulted on new areas of interest at the September 2022 meeting.
The topics for the work plan were later agreed in March 2023:
- Regulatory communications for the public including a general awareness of communications as well as understandability and readability of content.
- Continuing learning on how health products are developed and regulated, particularly medical devices and generic medicines.
- Understanding how the HPRA fits within the broader health system. This includes the roles and interface between health product regulation versus the use of health products in the delivery of clinical care and health services.
- Diversity and inclusiveness of the forum membership.
Further details on each of these topics can be found in the forum’s Rolling Work Plan for 2023.
Who are the members?
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.
How often does the forum meet?
The forum meets four times per year. If feasible, certain topics of interest to the forum may be explored by way of separate workshops.
Can anyone join?
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 firstname.lastname@example.org.
Where can I get more information?
Further details on how the forum operates and its work plan for 2022 can be found on the pages below:
If you would like any additional information, please contact email@example.com.