IPPOSI launched our Annual Theme for 2018 in February of this year. We ambitiously set out a number of actions to complete during the year. This update provides a snapshot on our progress to date.
Patient Charter: IPPOSI is working with our patient organisation members to develop a Patient Charter for Involvement in the Medicines Assessment & Reimbursement Process in Ireland. So far 20+ patient organisations have signed up to the draft charter. Go here to see what being a signatory involves. The Charter will be informed by international perspectives (IPPOSI webinar in May), including an upcoming Sept. 11th ‘Study Trip’ – with the NCPE – to a number of Scottish Medicines Consortium’s PACE (Patient And Clinician Engagement) meetings.
Rare Diseases: There have been a number of recent developments in this area including a meeting between the Minister for Health, Simon Harris, TD, and a delegation from the Rare Disease Taskforce, which included IPPOSI’s Derick Mitchell, Philip Watt (CF Ireland, MRCG) and Avril Daly (Retina International) in July. The Taskforce will soon be in a position to update the rare disease community about these developments including the newly formed Rare Disease Technical Review Committee.
3rd ‘Round Table’ Meeting: The third ‘Drug Iceberg’ Meeting, to be jointly-organised between MRCG and IPPOSI, has been pencilled in for late November 2018 – watch this space for more details. A third ‘Drug Iceberg’ report will be published shortly after, informed by the discussions from this meeting.
Policy Digest: The IPPOSI Health Policy Digest is in development. It’s purpose will be to share IPPOSI’s priority policy positions within the health innovation space, including our positions around patient access to new medicines. The Digest will contain factual summaries and analysis of key pieces of health legislation, regulation and policy both nationally and internationally. The Digest is scheduled to go live in December 2018.
Member survey: With the launch of the Access to Medicines Theme in February 2018, IPPOSI asked members to help decide on the organisation’s future priorities, like Access to Medicines, in the coming years. The results of that exercise are available here.
Drug Iceberg Reports: The second IPPOSI-MRCG ‘Drug Iceberg’ report (Feb 2018) captured the consensus of patients, academia, industry in a comprehensive document that includes key recommendations, concerns, and international case studies. The Report, which informed much of this article by Susan Mitchell in the Sunday Business Post, has proven itself to be a valuable asset, and one the community at large should be justifiably proud.
Patient Education: In March 2018, 19 students participating in the IPPOSI Pilot Patient Education Programme completed the Health Technology Assessment (HTA) module of the Programme, which was delivered by a combination of the Dept. of Pharmacology & Therapeutics, Trinity College Dublin, the NCPE and HIQA, all in partnership with IPPOSI.
NCPE Patient Submissions Consultation: In April 2018, the National Centre for Pharmacoeconomics (NCPE) launched a public consultation process on a revised Patient Submissions Process. IPPOSI submitted a response, which you can read here. NCPE have indicated that the results of this process should be finalised and communicated in the coming weeks.