More investment in clinical research is needed if Ireland is to have a world class research environment that benefits patients, Health Research Charities Ireland (HRCI) has said.
HRCI is the national umbrella body for 37 medical and health research charities. These represent over one million patients in areas such as rare diseases, mental health, childhood illnesses and chronic conditions.
HRCI has published a position paper, Research Towards a Healthier Ireland, which calls for a range of key actions if Ireland is to have a world class research environment.
The paper states that investment in clinical research is a key priority as this will result in better outcomes for patients, such as providing them with earlier access to innovative treatments through clinical trials.
The paper also calls for a public information campaign to inform people about the value of health research and to explain how consenting to the use of their data for health research works.
It expressed concern that the number of people taking part in research may fall. This, it warned, would result in longer timelines, greater costs and risking the success of some studies.
Meanwhile, the paper also calls for the development of a genomics strategy. Genomic medicine is the use of a patient's genetic information to develop personalised therapies based on their unique genetic make-up.
According to HRCI, this is likely to become first-line technology for healthcare within the next 30 years. It is therefore calling for a national genomics strategy that would include investment in a public genome project that, subject to full and informed consent by patients, would make Irish genomic data freely available for the purpose of research and to guide healthcare.
Speaking about this issue, HRCI chief executive, Dr Avril Kennan, insisted that without a thriving research community, patients will be affected. However, she emphasised that "one of the proven ways of ensuring a world-class health service is to put research at the heart of it".
"It's time we stopped fire-fighting in healthcare and instead took brave steps towards ensuring we are in safe hands when our health fails us.
"We can do this by investing in research in the clinical setting, by planning ahead for a time - not so far away - when knowing details about our genetic code can offer a more personal approach to medicine and by ensuring that patients and the public get a say in what areas of health they would like more research into," she said.
Meanwhile, according to one of the HRCI's founding members, Michael Griffith, the use of paper medical records needs to end in favour of "joined up digital thinking".
"It is unacceptable that health data is still largely recorded on paper and our own health data is not easily accessible to us.
"We need to move towards collecting all health data digitally and then, with full patient consent, ensure that we are gathering together and using that data to understand more about health conditions and ways to treat them. This will greatly facilitate health research and better patient outcomes," he explained.
The position paper, Research Towards a Healthier Ireland, was published at a conference marking the 21st anniversary of HRCI, which was previously known as the Medical Research Charities Group.
Discussions on this topic are now closed.