Blog

Resourcing health IT is an investment, not a cost

The current deficits in our digital infrastructure are significant, with inefficient and outdated information technology (IT) systems and hardware.

The continued absence of electronic health records (EHRs) also negatively impacts patient care, staff morale, and productivity.

With the majority of Irish hospital records still paper-based, there is an urgent need to fund a national EHR hospital-wide system without delay.

A fit-for-purpose digital health system for Ireland is essential to provide health staff with the necessary digital tools to optimise efficiency, collaboration, and productivity in a more modern health service. With these tools, consultants will be able to deliver improved accessibility, more efficient workflows, and most importantly enhanced patient care and safety.

Resourcing health IT is an investment, not a cost

My Palliative Care Journey

Throughout my life, I remember hearing about Palliative Care in hushed tones…..

When the lovely registrar arrived at my hospital bed to declare they were moving me to Palliative Care, I practically jumped and vomited from the fear and shock.

Not everyone who attends their hospice as a patient dies from their disease but many do.

Palliative Care is not just for end of life it can also bring quality of life, pain relief and research shows that engaging in it sooner rather than later can extend life. I am doing all that I can do to lengthen mine.

https://peakd.com/health/@clodaghdowning/my-palliative-care-journey?fbclid=IwY2xjawFxvtRleHRuA2FlbQIxMQABHcKlX1krYBQb5bDHbeh_Lk42Z15ZHzumP9EpJ2sgY7ytlb9mQJBRuCG-Bg_aem_fysg-eoiuTHR_bBBI9s-0Q

Lynch syndrome – Will I develop cancer?

Unfortunately, cancer is common, and in the majority of cases is not inherited. As many as 1 in 2 people will develop cancer in their lifetime. That is 50% of the world’s population.

Most cancers are not inherited and occur out sporadically or ‘out of the blue’.

Lynch syndrome makes certain (not all) cancer types more likely to develop. This is due having less protection from the cancer mismatch repair genes. This doesn’t mean that you will definitely develop cancer, but having less protection makes it more likely.

The way Lynch syndrome behaves in you and your family can be very different as the affected Lynch syndrome genes interact with other genes as well. Family history should be taken into consideration, but each family member will be affected differently.

Will I develop cancer?

What is Lynch Syndrome?

It is a type of inherited cancer syndrome associated with a genetic predisposition to different cancer types. This means people with Lynch syndrome have a higher risk of certain types of cancer.    

What causes Lynch syndrome?

What are the signs of Lynch syndrome?

How is Lynch syndrome diagnosed?

How is Lynch syndrome inherited?

What are the estimated cancer risks associated with Lynch syndrome?

What are the cancer screening options for Lynch syndrome? (USA)

Questions to ask the health care team

https://www.aliveandkickn.org/what-is-lynch-syndrome-1

Today is World Ostomy Day

Did you know that 1 in 355 people in the UK live with an ostomy? These numbers represent individuals who show incredible strength, resilience, and determination every single day.

World Ostomy Day is about raising awareness, educating others, and providing support for ostomates worldwide. It’s a chance to celebrate the courage of those who live with an ostomy and to break down stigma. Every story is unique, every journey inspiring!

➡️ Help us make a difference:

💬 Share your story or words of encouragement

❤️ Raise awareness by talking about ostomies and your experience

🙌 Show support to the ostomy community by using the hashtag #WeAreStMarks and #WorldOstomyDay!

Defining precancer: a grand challenge for the cancer community

https://www.nature.com/articles/s41568-024-00744-0?utm_source=twitter&utm_medium=social&utm_campaign=nrc

The term ‘precancer’ typically refers to an early stage of neoplastic(abnormal growth of cells) development that is distinguishable from normal tissue owing to molecular and phenotypic alterations, resulting in abnormal cells that are at least partially self-sustaining and function outside of normal cellular cues that constrain cell proliferation and survival.

Provides a starting point for a conceptual framework for defining precancer, which is based on molecular, pathological, clinical and epidemiological criteria, with the goal of advancing our understanding of the initial changes that occur and opportunities to intervene at the earliest possible time point.

Prevalence and Clinical Implications of Mismatch Repair-Proficient Colorectal Cancer in Patients With Lynch Syndrome

Conclusion:

Patients with LS remained at risk for MMR-P(proficient) CRC, which was more prevalent among patients with MSH6 and PMS2 variants. MMR-P CRC was later onset and more commonly metastatic compared with MMR-D(deficient) CRC. Confirmation of tumour MMR/MSI status is critical for patient management and familial risk estimation.

When people with Lynch syndrome develop cancer, their tumours typically have a related set of features or biomarkers known as deficient mismatch repair (dMMR) and high microsatellite instability (MSI-High). However, occasionally people with Lynch syndrome have cancers that are proficient in mismatch repair (pMMR or MMR-P) and have microsatellite stability (MSS or MSI-Low) –more like the colorectal cancers found in people without Lynch syndrome. This study shows that 10 percent of people with Lynch syndrome may have these types of cancers.

https://ascopubs.org/doi/abs/10.1200/PO.22.00675

Findings of the National Engagement on Digital Health and Social Care

Digital improvements will lead to greater availability of health information,
improvements in decision-making, and ultimately safer care and better outcomes for patients.

International experience highlights that engagement is crucial in order to learn what is acceptable to people and to help develop person centred digital systems.

The public overall are positive about the move to digital health and social care
services, and want to be consulted on the format and delivery of digital care.

Professionals think that an online health record will empower people to be more in control of their health.

https://www.hiqa.ie/reports-and-publications/health-information/findings-national-engagement-digital-health-and-social

Estimating cancer risk in carriers of Lynch syndrome variants in UK Biobank

Conclusion:

 These results support offering incidentally identified carriers of any path_MMR surveillance to manage colorectal cancer risk.

Incidentally identified carriers of pathogenic variants in MLH1, MSH2 and MSH6 would also benefit from interventions to reduce EC risk. The results suggest that Breast Cancer is not an LS-related cancer.

https://jmg.bmj.com/content/61/9/861

When patients worry about being judged

Just because people see me out in public, they shouldn’t assume that I’m back to normal or ‘feeling great.

She sure doesn’t look sick.  She’s a complainer.  She’s STILL off work?! 

“Some clinicians express frustration with patients who have invisible illnesses – blaming them, resenting symptoms without the privilege of certain expression, accusing them of exaggerating or being ‘difficult’, pathologising them as malingering or psychosomatic, or labeling them in ways that are dismissive of their deep knowledge and understanding of their own bodies and lived experiences.”

It’s not only spoken words that can make us feel  judged. In a study published in the Journal of General Internal Medicine,  for example, Dr. Leonor Fernández – an assistant professor of medicine at Harvard – reported that one in 10 patients she studied “felt judged and/or offended”  by comments written about them in their patient portal chart notes2  – especially among patients reporting poor health, unemployment or inability to work.

When patients worry about being judged