IPPOSI AGM and Conference

By patient representative Julie Power

This is the link to the IPPOSI conference, detailing speakers, agenda and photos from the day.


The take home messages for me was that

Electronic healthcare records (EHR) include more than just patient notes.

There is lots of technology involved in healthcare i.e. ICT is involved in delivery of all healthcare and this needs to be acknowledged at policy level.

There needs to be a cultural change to implement EHR

Patient involvement in the design and implementation of Electronic healthcare is recognized and necessary – co-creation from the beginning, creation of Citizen’s Juries to assist with this.

Information is stored in silos at the moment, there needs to be more sharing and learning from each other.

We need to learn from each other as the various stakeholders and also learn from other countries.

Multi- morbidity (co existing health conditions) increases the level of challenge.

Learn from present data, evaluate, learn, implement learned issues and re-evaluate on an ongoing basis- build in these learning cycles in ICT development.

Optimize with available resources.

Create EHR with reusable data to improve care.

Primary, Secondary and Tertiary care needs to be joined up.

Needs to incorporate all ages to help with difficulties in transition from children to adult services.

Experts live with the condition; specialists work with it.

Information needs to be supported with smart tools.

If you click on the link above, you will also get access to a terminology booklet, created by IPPOSI, which will explain the terms commonly agreed to use when talking about Electronic Health Care.

There is also a live recording available on this link.

One of the most inspirational speakers for me was Declan Noone, who spoke of how EHC helped in the care of Haemophilia, how they developed it and how it works.

Below is the picture of the 2019/2020 IPPOSI Board members, with me third from right as a patient representative.


NI Vasculitis Care Survey 2019


This is for people living in NI only
This survey was developed to complement the project ECHO scheme for Vasculitis in Northern Ireland and gives individuals living with Vasculitis a chance to express their opinion on the treatment they receive and the effect it has on living every day with this condition.  It has been designed by patients, for patients, […]

Let’s Talk About… Work, Alternatives and Medical Retirement


Come and join us for a coffee and a chat about work, volunteering, retirement with a chronic illness.
When: Monday 26 June 2017 @ 11am

Location: Niki’s Kitchen Cafe

107 Central Promenade, Newcastle BT33 0EU
028 4372 6777
For more details or to book your place, contact Emma at emmadtinsley@gogglemail.com

Northern Ireland Behcet’s Support Group meeting


Saturday 17th June, 2-4pm, in the PIPS Building, 30 Kilmorey Street, Newry BT34 2DE.
TOPIC: MANAGING PAIN AND FATIGUE SPEAKER :DR Ann O Hanlon BA (Hons), MSc, PhD Ann is the director of The I Can centre, and is also qualfied in Person centered Counselling and CBT Thanks to the funding received from the Lottery we (Behcet’s NI) are able to […]

First NI Vasculitis Conference, 24th May 2015, Burrendale hotel, Newcastle


 Vasculitis Ireland Awareness support group to date, by Julie Power
Vasculitis the basics, by Dr Dearbhla Kelly, Specialist Vasculitis Clinic, St James’ Hospital, Dublin
‘How we can help ourselves’, Self Help and Symptom Management groups available in NI, by Tricia Bowers Arthritis Care
‘How to get the most from our appointments and help ourselves’- Kieran Brogan, Patient Advocate, Peer Support Worker  
Pain Management, […]


A Charter for Patient Involvement

–  Medicines, Assessment and Reimbursement in Ireland

We are proud to be one of 35 signatories in this important document, which calls on the Irish government to improve transparency, accountability and communication on how medicines are assessed and reimbursed by the state, was co-ordinated by Irish Platform for Patient Organisations Science and Industry (IPPOSI), the Medical Research Charities Group (MRCG, and Rare Disease Ireland (RDI). It sets out 29 actions that the relevent 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.