On the morning of November 7th, at EU House, Baggott St. Dublin, IPPOSI together with the MRCG will host a meeting for patient members only on Access to Medicines. The purpose of this meeting is to build patient consensus on the objectives and format of a dialogue with political stakeholders, which is scheduled to take place in late November. This dialogue will aim to promote a cross-political-party conversation on the topic while recommending proposals that politicians can include in their election manifestos. Details and invitations will be sent out shortly via IPPOSI and MRCG channels.
IPPOSI investigate international best practice in HTA
On 11 September, IPPOSI travelled with MRCG and two representatives from the NCPE to observe a number of Patient and Clinician Engagement (PACE) meetings at the Scottish Medicines Consortium. PACE meetings provide an opportunity for assessment committee members within the SMC to hear more from patients and clinicians about their perception, experience and evidence of the effectiveness of a new orphan or end-of-life medicine. The model is perceived as a good practice for providing patients and clinicians with a stronger voice in the decision-making process. The visit proved particularly timely as Ireland itself prepares to host a first meeting of the Technical Review Committee for Rare Disease later this month – a new mechanism established by the NCPE to assess orphan drugs which involves the participation of two patient representatives.
Driven largely by the excellent EUPATI Toolbox, the EUPATI website recently crossed a huge milestone of 1 million users! It took just 2.5 years to make this happen, which is a great indicator of just what a valuable resource the EUPATI Toolbox is. In addition, the latest EU-IMI-EUPATI project (EFO-EUPATI – Ensuring the Future Of EUPATI) began in September 2018. The objectives of this two-year project are to: 1) develop a sustainable business model for EUPATI; 2) create a patient education & engagement portal; and strengthen the coordination of the EUPATI National Platforms (ENPs). IPPOSI is playing a major role as a workpackage leader as part of the project consortium.
IPPOSI has undertaken a number of actions with respect to how Brexit will impact on EU and UK patients. This work continued in September with an IPPOSI presentation to a session in the EU Parliament on September 27th. You can see that presentation here or follow the #brexit4patients hashtag on Twitter for more on this initiative. Our work will continue with a follow up meeting with the EU Article 50 Taskforce negotiating team currently scheduled for November 22nd in Brussels.
IPPOSI Board Members
At this year’s AGM, we were sorry to say goodbye to several board members who have given generously of their time and energy over the past several years. In particular we wish to thank: Tomas Carroll (Alpha-1 Foundation); Philip Watt (CF Ireland); Averil Power (Irish Cancer Society); Karen O’Keeffe (Pfizer); John Church (formerly Arthritis Ireland); Martijn Akveld (GSK); and Tom O’Leary (ICON). But as we say goodbye (for now!) to old friends I am pleased to introduce you to IPPOSI’s newest board members: Anne Marie O’Dowd (Cystinosis Ireland); Sarah O’Connor (Asthma Ireland); Grainne O’Leary (Arthritis Ireland); Anna Haas (Shire); Brid Seoighe (Janssen); and Eleanor Hannon (BioMarin).
List of Medicine Shortages
The Health Products Regulatory Authority now maintains a list of medicine shortages on its website. This may be of use to patient members of IPPOSI, particularly with one eye on Brexit next year, and the possible disruption to supply chains that this might bring.
GDPR and Clinical Trials
October 29th EUPATI will host a webinar about how GDPR impacts clinical trials – the time is 16.00-17.30 GMT, and please note that you have to register to attend.
HRB Conference: Big Data in Health (November)
IPPOSI CEO Derick Mitchell will be participating as part of the HRB’s annual conference which this year focuses on Big Data in Health. The event takes place on November 27th and places are filling up fast. Go here to see the programme for the event, where you can find registration via the same web page.