In February, IPPOSI published A Charter for Patient Involvement in Medicines Assessment & Reimbursement in Ireland. 36 Irish patient organisations signed the Charter, which calls on the government to improve the transparency, accountability and communication on how medicines are assessed & reimbursed by the State. The charter sets out 29 actions that the relevant State agencies (Department of Health; Health Service Executive, National Centre for Pharmacoeconomics) should take to inform and include patient perspectives at every stage of the process. Dedicated web page here.
The All Ireland Institute of Hospice & Palliative Care is seeking new members for its Voices 4 Care group. Joining the group gives people with a life-limiting illness/palliative care needs, their carers and communities the opportunity to influence palliative care education, research, policy and practice in both the Republic of Ireland and Northern Ireland. More info here.
Also, Sharon Thompson, a graduate of the first EUPATI Patient Expert Training Programme, and member of the Irish EUPATI National Platform, spoke at the WHO Executive Board Meeting in Geneva in January, on the need for palliative care worldwide. You can read the blog she wrote about her experience for the European Association of Palliative Care here.
Rare Disease Day 2019
The 12th annual Rare Disease Day (Ireland), ‘Bridging Health & Social Care’, took place on February 28th in Dublin. The event in focused on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families face every day. Photos from the day are available here – thanks to everyone involved in organising the day, including: Rare Diseases Ireland (RDI); Medical Research Charities Group (MRCG); IPPOSI; Fighting Blindness; Cystic Fibrosis Ireland; MSD Action Foundation; Northern Ireland Rare Disease Partnership (NIRDP).
Rare Disease Survey
A team of researchers has developed this survey at UCD in collaboration with partners from the National Clinical Care Programmes, Rare Diseases Ireland and Rare Disease Taskforce. The purpose of the Survey is to identify shared challenges of Rare Diseases. Survey participants are being asked to complete the survey as part of a consultation exercise by the Rare Disease Research (RAinDRop) partnership which will seek to influence future research priorities in Rare Disease. The survey is open to anyone who is a patient, family member, carer, health professional, researcher or a member of the public.
Patient Education Programme
The students of the IPPOSI Patient Education Programme are roughly half way through Module 1: Clinical Trials and the second face-to-face session took place in UCD last week (see pic on left). While the majority of the education programme is delivered through elearning, the in-person sessions are highly valued by students, which is why such sessions were increased in this year’s education programme. For more on the patient education programme, go here.
NCPE Patient Organisation Database
The National Centre for Pharmacoeconomics (NCPE) has developed a Patient Organisation Database. Patient organisations wishing to make a Submission of Evidence now or in the future, can register with the NCPE using their Database Registration Form. This allows the NCPE to notify patient organisations when assessments relevant to their disease area are being conducted. The only information recorded in this database is the information provided by the organisations through this form. The database will not be shared with any other organisation.
Department of Health / Research Ethics Committee
The Government has approved proposals by the Minister for Health, Simon Harris, to prepare a General Scheme of a Bill to provide for national research ethics committees (RECs). The proposed new system will address concerns that have been raised by stakeholders over the last decade about the existing RECs system in Ireland for clinical trials and health research generally. This approach aims to maximise synergies and make Ireland a more attractive international location for all health research. More here.
DCU PPI Ignite: Seminar
On March 27th (1pm) there will be a PPI Ignite seminar in DCU on communicating and managing relationships with the public and patients at DCU’s Glasnevin campus. A number of public and patient bursaries for travel expenses are available for this seminar. Please contact firstname.lastname@example.org for more information by March 20th. More info here.
Health Research Board / DASSL
The HRB recently announced a funding call to create a proff-of-concept for the Data Access, Storage, Sharing & Linkage (DASSL) model, which presents a model for discussion on the safe use of patient data in Ireland. An information webinar recording on the ‘Proof of Concept Technical Model for DASSL award’ is available here.
The SPHeRE Programme is now accepting applications for the 2019/20 academic year from: 1) Individual applicants; 2) Supervisors/Principal Investigators with an alternative funded Scholar who wish to apply for inclusion of their candidate on the Programme. This is a four-year programme, more information here, deadline: April 5th 2019.