ublic dissatisfaction with the health service in Ireland has created an opportunity to develop the country as a future hub for clinical research. But first there needs to be a public information campaign that can raise understanding of clinical research and overcome a particular national reluctance to take part in drug trials.
These are among the main conclusions of a report into the general public’s attitudes to clinical research, prepared by Drury Research for the Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI). Despite the significant obstacles identified in the report, it also found strong public support for the contributions made to society by clinical research and for Ireland becoming a focal point for that research.
Establishing the country as a globally competitive location for clinical research is a key determinant of Ireland’s future economic prosperity, the IPPOSI report suggests. Yet if Ireland is to successfully build a world-leading clinical research infrastructure, it must be confident that the public understand and are firmly behind the sector.
On the first count, Drury found a low level of understanding of clinical research, “over and above a general recognition that it relates to ‘medical research’”, the report noted. One problem was that the Irish public largely struggled to differentiate between clinical trials and the broader concept of clinical research, which might include not just testing drugs but activities such as comparing blood and tissue samples from healthy and sick people, or collecting medical data from patients with a view to observing their progress or responses to different treatments.
That meant a tendency to associate clinical trials with a high level of patient risk, and especially with potentially harmful drug side-effects, spilled over into perceptions of clinical research as a whole. “In all focus groups respondents reported anecdotal cases of patient deaths as a result of participation in clinical drug trials,” the report said. Very few were comfortable about taking part themselves, while the majority of the Irish public “tend to view participation in clinical research/clinical trials as an option of last resort for very sick patients”, it added.
At the same time, the research respondents were highly supportive of clinical research as an activity that led to medical advances in the understanding of disease, improved patient care via monitoring and access to medicines, and knock-on benefits to the Irish economy (e.g., employment). They believed clinical research “remained critical to finding new cures for existing diseases and that it was imperative that such research continues to facilitate medical and scientific progress”.
What managed to resolve this paradox to some extent was presenting basic information on the goals of clinical research, the degrees of participation, and adherence to protocols in the form of patient consent, confidentiality and independent ethics committees.
Thus informed, the respondents were “universally more positive” about the prospect of taking part in clinical research, with 70% saying they would be willing to donate blood for research purposes and 65% that they would happily supply personal information for use in clinical research, providing it were kept confidential.
These reassurances did not, however, break the deadlock on clinical trials, with very few of the respondents willing to engage even after learning about informed consent, ethics committees, etc. “The key psychological barrier for the majority of respondents remains a reluctance to take what they perceive to be an unnecessary risk with their health by ingesting a drug with potentially harmful side-effects,” IPPOSI commented.
IPPOSI is convinced a basic public information campaign in Ireland could address many of the current obstacles to patient participation in clinical research, such as limited understanding of the different entry points available or common misconceptions about patient risk. But it is clear drug trials will remain a challenging proposition if Ireland is to benefit fully from the latent goodwill towards positioning the country as a first-choice location for clinical research.