Newsletter January 2020

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IPPOSI MEMBER’S SURVEY IS NOW LIVE.

Here at IPPOSI we are shaping our future strategy and identifying priorities for our organisation for the next 4 years.  As part of that process we are seeking input from our members on your experiences as an IPPOSI member, how you rate our methods and channels of communication and what areas of work you would like to see us prioritise for the next five years?  The survey will take approximately 10 minutes to complete and will offer us an invaluable insight into the wants and needs of our members. Please be frank, and tell us what you like about what we do, but just as importantly, tell us honestly what you would like to see us do differently.  We will be in touch in the coming weeks to share an analysis of the responses received.  Take the survey here.

IPPOSI Annual Conference Outcome Report available online. 

This IPPOSI annual conference outcome report, “Electronic Health Records: Getting it right form the start”, is available to download from our website. The report is a record of the observations, concerns and recommendations raised by the 200+ patients, clinicians, researchers, regulators and government representatives who attended our conference on the 7th October, 2019.  If you have ever wondered why Electronic Health Records (EHRs) are not a reality in Ireland or if you are curious as to when can we expect to have EHRs in Ireland then the report gives a snapshot of the current situation in Ireland.  The report also highlights  patient attitudes to and expectations of EHRs, as expressed at the conference, demonstrating how the lack of EHRs negatively impacts the lives of patients living with chronic health conditions. You can access the report here. 

Applications now open for Training Programme for Young Patient Advocates.

The European Patients Forum have opened applications for their Summer Training Course for Young Patients Advocates (STYPA) – Leadership Programme. Applications are open to young patients 18 – 30 years of age. The programme is open to young patients with a chronic and/or lifelong illness/condition. Patients can be affiliated to a patient organisation or they can apply as an individual. Applications are also open to young employees or volunteers of a patient organisation. Family members and/or carers of a young patient with a chronic and/or lifelong illness/condition can attend the training if he/she accompanies a young advocate and is at the same time an active patient advocate. Applications will be accepted until midnight on 1 March 2020. Travel and accommodation costs will be reimbursed by EPF. More information and application form available here. 

People with a lived experience of cancer are invited to give their input to the challenges researchers face in cancer research projects.

Have you a lived experience of cancer? Are you a patient, family member, carer or patient advocate? If so, you are invited to become a ’Friendly Dragon’ at an event in Galway on Feb 25, 2020.

About this Event
Patient Voice in Cancer Research in conjunction with the National Cancer Research Institute (UK) presents a workshop to bring those with a lived experience of cancer together with academic researchers working on cancer projects. The workshop will take place in the late afternoon/evening of Tuesday 25 February 2020 in Galway. Register via eventbrite, and please share with others who may be interested.

More information is available here.

26 February 2020
 

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