Category: PPI

Being involved with Trials Methodology – some reflections from Derek Stewart 

‘Research into the methods used in the design, conduct, analysis and reporting of clinical trials is essential to ensure that effective methods are available and that clinical decisions made using results from trials are based on the best available evidence, which is reliable and robust.’

Patient, Public Involvement brings a pragmatism, external perspective and opinions on the uncertainties that methodologists wrestle with as part of the decision making within their work. It is precisely in this space that the contributions can be so valuable. Equally for those us who get involved it provides an opportunity to learn more about health research methods and helps us ask better questions with other projects.

https://www.hrb-tmrn.ie/2023/04/30/being-involved-with-trials-methodology/

 National Strategy for Accelerating Genetic and Genomic Medicine in Ireland

The key strategic areas of focus for the development Ireland’s genetics and genomics service are:

  • Coordinating a national approach to genetics and genomics: A national office for genetics and genomics will be established to oversee all aspects of genetic and genomic clinical service and research activities, engage with key stakeholders to address policy and legislative gaps, and drive the implementation of this strategy.
  • Ensuring Patient and Public Involvement (PPI) and Partnerships: In alignment with Sláintecare, this National Strategy outlines our approach for developing a sustainable patient and family centred genetics and genomics service that can be accessed equitably across the country and across the lifespan of patients. The service is to be supported by strong governance, a skilled workforce, pioneering research and innovation, and trusted partnerships.
  • Building the genetics and genomics workforce for the future: A workforce plan will support recruitment, retention, education and career development of the current specialised workforce which includes genetic counsellors and clinical scientists. Staff will be supported and will develop specialised knowledge and skills in genetics and genomics.
  • Enhancing genetic and genomic clinical services: There is a need to continue the transition of genetics and genomics into routine service delivery and support the use of evidence-based genetic and genomic tests. This will enable the development of locally integrated, multidisciplinary, patient and family centred diagnostic and care pathways. 
  • Strengthening infrastructures to drive advances in genetics and genomics: Supporting infrastructure is needed to collect, test, store, process and analyse samples for both patient care and ongoing research applications. To strengthen data infrastructure, existing genetic and genomic data capacity and capability will be reviewed. Continued work on further infrastructure implementation will be carried out to support clinical service delivery.

Click to access national-strategy-for-accelerating-genetic-and-genomic-medicine-in-ireland.pdf

2023: A new start for genetic and genomic medicine in Ireland?

According to the HSE’s website, there is “room for improvement” in the medical genetics and genomics services offered in Ireland when compared to other European countries. (perhaps an understatement???)

The strategy states: “To date, Ireland has made some progress in developing its genetic and genomic services, with pockets of excellence evident throughout the country. However, to fully realise the benefits of genetics and genomics, there is an urgent need to mainstream them so that they can become an integral part of our routine care delivery.”

Strategies are very helpful in healthcare because a strategy gives you a sense of direction….

Provided for under this strategy is:

  • the creation of a new national office for genetics and genomics
  • the transition of genetics and genomics into routine care delivery
  • targeted workforce planning and development
  • ensuring Public and Patient Involvement (PPI) and partnership
  • the strengthening of Ireland’s infrastructure to drive advances in this area.

On the impact of the national office, Dr Henry predicted there will be a high level of activity “in year one, and the office will drive it”. He said it will “become the engine of what happens in year two, three, four, and later”.

Also, the office will “advocate” and “compete for funding each year”.

As our understanding of disease evolves, it is very clear that genomics will inform much of the decision-making

2023: A new start for genetic and genomic medicine in Ireland?

Cancer Trials Ireland Cancer Retreat Report 2022

PPI is becoming mainstream in research and is now a key determinant when awarding funding grants. Patients are seeking empowerment through true partnership and should be consulted at the very earliest stages of defining the research question. This will help to ensure trial success.