Congratulations to the 2019 graduates from the IPPOSI Patient Education Programme. These patients and patient advocates are now enabled with the skills and knowledge to work effectively with Irish and EU-level health research & technology partners, agencies & authorities. A big thank you to our 2019 sponsors – Health Research Board (KEDS-2018-020), AbbVie Ireland, GSK Ireland, Janssen Ireland, Pfizer Ireland and PPI Ignite at Trinity College Dublin. Their support, along with the significant in-kind contributions of our Education partners (UCD Clinical Research Centre, the HPRA, the NCPE and HIQA) and IPPOSI staff allowed us to deliver this innovative course for a second time. You can view a selection of photos from the graduation day on our Flickr account now.
IPPOSI PREMIERES NEW PATIENT DATA GAME AT SCI:COM
SCI:COM Is Ireland’s annual Science Communication event which brings together an eclectic mix of speakers and participants from the world of science communication and beyond for 2 days of workshops, talks, panel discussions and networking. This year IPPOSI was delighted to take part in SCI:COM where we hosted a Play:Decide Board game on the issue of accessing and sharing Patient Data. Play:Decide is a creative way for participants to tackle controversial or complex questions in a structured, respectful and fun way. IPPOSI’s Game data is live and available to download from the PlayDecide website here.
HSE Action Plan for Research 2019-2029
IPPOSI was delighted to contribute to the development of the recently launched HSE Action Plan for Research. This is a big day for health research in Ireland and congratulations are due to Dr. Ana Terres and her team in the HSE on the publication of this ambitious and patient-centered plan for health research in the HSE. A new HSE research website is now live, with the results of a review of HSE research activity as well as the ten-year plan now available for download from that site. Congratulations also to IPPOSI Patient Education programme graduate Bernadette Gilroy of PKU Ireland who delivered a patient perspective during the launch event on Monday of this week.
PPI IN INDUSTRY-LED RESEARCH
Health Research Charities Ireland (HRCI) are organising a morning briefing on PPI in industry-led research on Wednesday, January 29th (9:00am – 11:00am) in the Radisson Blu hotel, Golden Lane, Dublin 8. The briefing is primarily aimed at charities and industry representatives engaged in health research (but others are very welcome). The event will highlight a recent guide ‘Supporting Patient and Public Involvement in Industry-led Research: Guidance for Charities’ which HRCI partnered on with the UK-based PPI Shared Learning group. Limited number of tickets are available here.
POWERED BY THE PUBLIC
Does reading a book in bed make a difference to sleep in comparison to not reading a book in bed? This is the question being posed as part of the current phase of The Peoples Trial, a new and innovative way to participate in scientific research, where the public decides all the major steps of a randomised trial. In Phase 1, people from 20 countries decided what questions they wanted answered. In Phase 2, the public picked their Top 10 questions and then the public picked the final question they would like The People’s Trial to tackle. In this current phase they have amassed a cohort of people who want to take part in the trial itself (start date to be decided) and you can still register to take part by signing up here. 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.
Data Saves Lives
The European Patients’ Forum (EPF), the European Institute for Innovation through Health Data (i~HD) and other key players from the health data communities, including IPPOSI, launched the ‘Data Saves Lives’ Initiative at the EPF’s Congress in Brussels on the 12 November 2019. Data Saves Lives aims to raise wider patient and public awareness about the importance of health data and to improve our understanding of how it is used. A European health data website is now live. It is hoped that this website will build awareness and understanding on why health data is important and how it is used. The website will also promote real-life examples of how data is used for the benefit of patients and provide resources that can be adapted at a local level so the various partners can promote the key messages of the campaign in their local communities.
PPI ON SCREEN
The Patient Effect is a half-hour documentary which tells the story of public and patient involvement (PPI) in research. It premiered at the Pálás Cinema, Galway on Saturday, 16th November. There are plans for further nation-wide screenings in Dublin, Limerick and Cork and IPPOSI will update our members with details when available. The documentary tells the story of how Public and Patient Involvement in Research has the potential to hugely enhance the quality and relevance of health and medical research. Directed by Mia Mullarkey of Ishka Films, this documentary follows three personal stories, which reflect the power of including public and patient voices in planning and conducting research.The documentary is funded by a Health Research Board KEDS award to the HRB Primary Care Clinical Trials Network Ireland and by CÚRAM, SFI Research Centre for Medical Devices, NUI Galway.
HSE LAUNCHES PATIENT ADVOCACY SERVICE
On the 13th November last Minister for Health, Simon Harris, launched the HSE’s new Patient Advocacy Service. The service is aimed at supporting patients who wish to make a complaint about care received in a public hospital.The new service offers a confidential helpline with experienced advocates on hand to provide information and support to patients who want to make a formal complaint to the HSE about the care they experienced in a public hospital. The Patient Advocacy Service, funded by the Department of Health and independent of the HSE, is a free and confidential service. The tender to provide the service was awarded in 2018 to the National Advocacy Service, which is funded and supported by the Citizens Information Board.
HIQA GUIDANCE ON HUMAN RIGHTS APPROACH IN HEALTHCARE
HIQA has published a guidance document for for all health and social care services to assist staff and organisations to uphold human rights in their practice. The document is guided by the principles of human rights policy, Fairness, Respect and Equality. There are 3 key resources in the guidance document. Resource 1 provides a description of key human rights that are relevant to health and social care services. Resource 2 provides a decision-making aid that uses a human rights-based approach. Resource 3 provides useful contacts and links for staff with further information in relation to human rights. You can access the document here