There is a need for more investment in clinical research if Ireland has a world-class research environment that benefits patients, the Irish Health Research Charity (HRCI) has said.
HRCI is the national umbrella body for 37 medical and health research charities. They represent over a million patients in areas such as rare diseases, mental health, childhood illnesses and chronic conditions.
HRCI has published a position paper, t Research towards a healthier Ireland, which requires a range of key actions if Ireland has a world-class research environment.
The paper states that investment in clinical research is a key priority as it will result in better outcomes for patients, such as providing them with earlier access to innovative treatments through clinical trials.
The paper also requires a public information campaign to inform people about the value of health research and to explain how their data is agreed for the use of health research works.
He expressed concern that the number of people participating in research could fall. As a result, he pointed out that timelines would be longer, more costs and that some studies would be successful.
The paper also requires the development of a genomics strategy. Genomic medicine involves using the patient's genetic information to develop personalized therapies based on their unique genetic union.
According to HRCI, this is likely to be a first line technology for healthcare within 30 years. It therefore seeks a national genomics strategy which will include investment in a public genome project which, subject to the full and informed consent of patients, would provide Irish genomic data free of charge for research and guidance purposes. for health care.
Speaking about this issue, HRCI's chief executive, Dr Avril Kennan, argued that without a successful research community, patients will be affected. However, it emphasized “one of the proven ways of ensuring an excellent health service is to put research at the heart of the service”.
"It is time to stop fire fighting in health care and instead we took courageous steps towards ensuring that we are in safe hands when our health fails.
"We can do this by investing in research in the clinical setting, by planning ahead – not far away – where information about our genetic code can offer a more personalized approach to medicine and through it. ensure that patients and the public have a say in the areas of health that they would like to research more, ”she said.
Meanwhile, according to one of the founders of the HRCI, Michael Griffith, paper medical records must be used in favor of "combined digital thinking".
"It is unacceptable that health data is mostly recorded on paper and that our own health data is not easily accessible.
"We need to move towards the digital collection of all health data and then, with the full consent of patients, to ensure that we are collecting and using that data to understand more about health conditions and ways of doing so. treat them, fruit, ”he explained.
The location paper, Research towards a healthier Ireland, published at a conference marking the 21st anniversary of HRCI, formerly known as the Medical Research Charities Group.
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