Newsletter August 2019

//Newsletter August 2019

Want to join the IPPOSI board?

IPPOSI is seeking to appoint up to five new directors (board members) at the 2019 IPPOSI AGM on October 7th. If you are interested in being considered yo uhave until September 2nd 2019 to apply, and you can learn more about what the role entails, how to apply and/or make a nomination by going here.

The IPPOSI Board of (non-executive) Directors is made up of 20 representatives from our current membership – Patient Organisations (8), Science (6) and Industry (6). The Board provide strategic direction and governance to the organisation, helping to support the IPPOSI staff and guide all aspects of our work.

We aim to have a broad range of experiences on the Board from those working in a professional capacity at one of our member organisations.

Electronic Health Records Conference

IPPOSI is pleased to announce that our 2019 Conference is Patients Included compliant. You can find out what that means generally by going here (and specifically for the 2019 conference by going here). Over 150 people have registered for the conference. If you have not already registered you can do so here.

Dept of Health Strategy for Health Systems

The outputs from a number of recent Department of Health ‘Challenge Panels’ are available at the links below. These panels are being used, in part, to guide the development of the Department’s ‘Health Information Systems Strategy’.  A number of IPPOSI / patient representatives attended these workshops and we wish to personally thank everyone for their involvement on behalf of IPPOSI.

Wendy Costello appointed to NCRC

Wendy Costello is a graduate of the IPPOSI Patient Education Programme, and recently became the first ever patient advocate appointed to the National Children’s Research Centre (NCRC) Scientific Advisory Committee. IPPOSI wishes to congratulate Wendy on this achievement and wish her every success in the role! You can read more about her appointment here. On behalf of IPPOSI, Wendy is also attending the 2nd annual Patient Engagement Open Forum in Brussels on September 18th and 19th, an event co-organised by EUPATI, PFMD and PARADIGM.

HPV Vaccine Campaign 2019/2020

As a member of the HPV vaccination alliance, IPPOSI continues to be a strong supporter of the HPV Vaccine campaign, the latest iteration of which was launched this week by Minister Simon Harris. As has been widely reported, the programme now extends to boys. You can support the campaign online over Twitter by going here and following instructions. For more on the campaign, visit www.hpv.ie on the HSE website.

HSE Digital Academy Forum

The HSE will be hosting a Digital Health Education and Transformation session on September 4th in Dr Steeven’s Hospital from 10.30am – 1pm. If you are interested in attending, email [email protected] before September 2nd. Speakers include Dr Colm Henry, HSE Chief Clinical Officer; Dr Michael Harty, chair of the Oireachtas Committee on Health, and IPPOSI’s own Derick Mitchell. More information available here.

Survey – patient involvement in reimbursement

Patients, advocates, carers and organisations with an interest in access to medicines and reimbursement may wish to consider taking part in a survey of patient organisations on the question of patient involvement in reimbursement. The survey takes approximately ten minutes to complete. This survey has been commissioned by Axis Consulting, and its findings will be published on their website.

TOPRA session on HTA Convergence

On October 2nd, IPPOSI CEO Derick Mitchell will be the opening speaker of a parallel session on Day 3 of the TOPRA (The Organisation for Professionals in Regulatory Affairs) International Symposium in Dublin. Derick is speaking in a session entitled ‘HTA Convergence – the effects on development and regulatory processes’.  You can find out more about the symposium here, or view the full programme here.

Bill to reform the Research Ethics landscape

The Department of Health has published the General Scheme of the National Research Ethics Committees Bill, confirming plans to develop a streamlined, regulated and fit-for-purpose model for the ethical review of health research projects. The Bill will modernise the current system, in an effort to support more consistent and more efficient decisions for research studies. The reform will see the establishment of a number of National Research Ethics Committees, starting with one in the area of clinical trials of medicinal products. These single-opinion national committees will be supported by dedicated and professional staff in a National Office for Research Ethics Committees (to be hosted by the Health Research Board). More information here.

Ken Rogan – thank you

After more than five years with IPPOSI, our Communications Manager Ken Rogan is moving on to new challenges. Many of our members will know Ken from his policing the roving microphone at our events, and ‘asking’ attendees/staff/board members to stand closer together for event photos. Behind the scenes, Ken has co-ordinated and managed numerous IPPOSI projects and outputs, including our publications, and digital platforms. He has been a key point of contact for IPPOSI members in his time with us, and he will be missed by staff and members alike. We wish him well in his onward journey and thank him for his work in IPPOSI since 2014.  We are currently actively recruiting a replacement for Ken, with a deadline for applications of September 6th, 2019.

The People’s Trial

The People’s Trial is a new and exciting way for any member of the public to participate in scientific research. Participants decide all the major steps of a randomised trial, and anyone can take part – no special skills or training needed. The creators tell you everything you need to know to get involved. The People’s Trial is funded by the Health Research Board, through the HRB-TMRN, as a Knowledge Exchange and Dissemination Scheme (KEDS) Award 2018. More information here.

2019-08-29T14:31:41+00:00 29 August 2019|Newsletters|0 Comments
 

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