Annual Theme 2019: Dedicated webpage launched
Our dedicated Patient Data / Annual Theme webpage is now officially active. We invite you to click here to explore our priorities under this theme for 2019, in particular the October 7th Conference on Electronic Health Records, new topics for the IPPOSI Patient Education Programme, as well as the launch of a Knowledge Hub on the IPPOSI website.
EFO-EUPATI call
The EFO-EUPATI project – which focuses on the future sustainability of EUPATI – is seeking expressions of interest from organisations who can promote and support activities and collaborations within the now-regionalised ENP networks. Three regional networks were established in September of 2018 – you can see the breakdown of these groups, and all other information relevant to the call, in this expression of interest document.(.docx, 156Kb)
Meanwhile, IPPOSI is once again organising the AGM of the EUPATI National Platform (ENP) Network for 2019. This year’s AGM will take place in Copenhagen on May 20th, and the conference will focus on the task of creating a common ENP message that can be applied across a diverse range of health systems.
Media & Public Speaking training
Congratulations to the IPPOSI Patient Members and others who took part in this year’s Media Training & Public Speaking sessions, delivered by IPPOSI’s Ken Rogan. 13 participants undertook a detailed study of story-telling, media engagement and presentation delivery across two very busy days. We look forward to seeing these patient communicators deliver presentations and media interviews in the near future!
Submission on Orphan Drugs
This month, IPPOSI made this submission to the Joint Oireachtas Committee on Health concerning an amendment to the 2013 Health Bill (Pricing and Supply of Medical Goods). Overall, it is evident to IPPOSI that the 2013 Act does not sufficiently recognise or allow for orphan medicinal products to be considered differently than non-orphan medicines.
Graduate Diploma in Health Innovation
Health Innovation Hub Ireland (HIHI) has announced a new Postgraduate Diploma in Healthcare Innovation, the first of its kind to be focused on the development of ‘Healthcare Innovation Ambassadors’ in Ireland. Uniquely, this programme develops the person to be innovative in their approach and thought processes within healthcare, rather than current offers where the focus is on the innovation itself. Places on the course are mixed, and are available to both industry and HSE staff. More information here.
Patient Education Programme graduate Marian O’Mahony
Congratulations to Marian O’Mahony, a graduate of the first IPPOSI Patient Education Programme, who has been accepted onto the the Voices4Care forum, run by the All Ireland Institute of Hospice & Palliative Care. The Voices4Care forum explores the palliative care needs of patients, carers and citizens with a view to improving palliative care services.
Patient involvement opportunity: Health Apps Library
In order to address the difficulty of navigating the intensely crowded health & medical App space (325,000+ Apps), the HSE/eHealth Ireland entered into an agreement with ‘Orcha’ in 2018 to provide a pilot eHealth Ireland App Library. Now in pilot phase, this library is designed to offer the general public and healthcare professionals access to a library of relevant health apps which have gone through a review and rating process. If you are a patient who would like to help establish if potential users would find it useful (what you like, what gaps you identify etc), you can request to become involved in the review process by emailing communications@ipposi.ie. More information here.
Human Tissue Bill
The government has approved a decision to publish the General Scheme of a Human Tissue Bill. Significantly, the Bill provides for the introduction of an opt-out system of consent for deceased organ donation and an associated register. IPPOSI supports the work of the Irish Donor Network in this area, which strongly supports the change to a soft opt-out system of organ donation in Ireland. More here.
International Clinical Trials Day (2019): Two events
IPPOSI will be taking part in a HRB-CRCI event on May 13th in the Mansion House Dublin, where Dr. Derick Mitchell (IPPOSI), Dr. Sarah McLoughlin (Retina International; Patient Education Programme graduate) and Mark Moran (Education Programme student) will take part in the panel discussions following the plenary speakers. The event is free, open to the public, and is at full capacity but you can go here to join the waiting list.
A week later, on May 20th, St James’s Hospital will host a patient and public awareness event with a view to updating attendees on the clinical trials that are taking place in the hospital. Their aim is to promote awareness of trials in general and also how patients can get involved in trials, if they so wish.
GDPR update
The Department of Health have announced that its engagement with the Data Protection Commission and the Department of Justice and Equality on the Health Research Regulations has led to agreement that the time frame for obtaining explicit consent for the processing of personal data for a health research project that was ongoing on 8 August 2018 is to be extended to 7 August 2019. More information here.
