Health Research Charities Ireland has issued an action plan for improved health research that seeks better patient outcomes in line with concerns around consent and data.
‘Research towards a healthier Ireland’, a position paper launched today (18 September) by Health Research Charities Ireland (HRCI), outlines five actions it believes are critical to advancing health research in the country.
HRCI (formerly the Medical Research Charities Group) represents 37 medical and health research charities that collectively represent more than 1m patients. These groups span many areas of health including rare diseases, cancer, childhood illnesses, mental health, chronic illness and disability. The five actions they want to see prioritised are intended to establish Ireland as a world-class research environment delivering better patient outcomes.
‘One of the proven ways of ensuring a world-class health service is to put research at the heart of it’
– DR AVRIL KENNAN
“Irish patients and their families are nervous about the health service and whether the care they get will be as good as they would receive in another European country,” said HRCI CEO Dr Avril Kennan. “One of the proven ways of ensuring a world-class health service is to put research at the heart of it.”
Dr Michael Harty, TD, chair of the Joint Oireachtas Health Committee, cited “substantial interest” from the Government in the promotion of and investment in research projects, demonstrated by the establishment of a research forum of TDs and senators.
“An initial meeting was held in the early summer which looked at research in science, technology, engineering, arts and mathematics. In relation to health research, Sláintecare reforms place a strong emphasis on e-health developments including digital shared care records, e-prescribing and the collection and collation of real-time data,” said Harty.
First and foremost, the HRCI demands increased investment in clinical research. Such investment could drive earlier access to innovative treatments through clinical trials.
Specifically, the HRCI pressed for the implementation of the recommendations of the Future Investment in Clinical Research report, which recommended an initial investment of €22m in clinical research in the first year, with biopharma and medtech industries matching that investment.
2. Public information campaigns
HRCI also highlighted the importance of engaging the public and communicating the value of health research. In light of increasing concerns around the use of patients’ data in such research, HRCI is concerned that fewer patients will agree to participate in studies.
The organisation suggests implementing independent public information campaigns to educate patients on consent and how their data will be used in health research, and to encourage patients to discuss these matters with their doctors.
3. National genomics strategy
A burning issue in health research right now is the use of genomic data, and HRCI recommends that the Government establishes a national genomics strategy to tackle it.
Genomic medicine uses patients’ unique genetic information to develop personalised therapies and is expected to become the forefront of modern healthcare in the coming decades. However, how this data will be obtained, managed and used by private healthcare companies has been subject to much debate.
HRCI wants to see support for this frontier of medicine through a national genomics strategy investing in a public genome project that – with full and informed consent from patients – would provide Irish genomic data freely to researchers.
4. Patient involvement in research
In order to support public and patient involvement in research, HRCI suggests a national coordinating structure that would consolidate disparate efforts to put patients at the heart of research.
Michael Griffith, one of the founding members of HRCI, said: “Too often, health research is driven by a need for academic publications and profit rather than what is actually important to patients. As someone with a visual impairment, it is far less relevant to me for researchers to measure how many cells I have in my retina, following treatment with a new therapy, than to measure a real impact on my quality of life.
“I also believe that we need to be alert to the fact that the pharmaceutical sector is not always driven by patient interests and that strong patient organisations are necessary to keep an eye on how they operate. In particular, patient organisations that operate at an international level, or that are internationally linked, can have real power in forcing the pharmaceutical industry to consider the needs of patients.”
5. Sharing of registry data
Finally, HRCI also called for a national federation of patient registries, which hold important data that can stimulate and inform research.
“It is unacceptable that health data is still largely recorded on paper and our own health data is not easily accessible to us,” said Griffith. “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.”
The HRCI says that while its members have been appealing for increased collaboration and sharing of resources in registries, there is no national policy for patient registries and limited financial or practical support for them.