Researchers involved in the Innovative Medicines Initiative-funded EUPATI (European Patients’ Academy on Therapeutic Innovation) consortium project believe that increased engagement and involvement from patients in research could help increase study recruitment and retention, improve the patient experience and help support the development of new medicines. As part of the project, an online survey (1) was conducted in six European countries to explore current public knowledge and interest about drug development – or lack thereof...
Perhaps unsurprisingly, the majority of people surveyed don’t know much about the process of making a new medicine – more than 75 percent of the 6931 respondents said they had “no” or “less than good” knowledge about medicine R&D. The study authors say there could be a couple of reasons for this; for example, the survey explored self-reported knowledge and respondents may have been unaware of their true knowledge levels.
But it could also reflect a lack of information provided to the public on these subjects. The gap in knowledge apparently wasn’t due to a lack of interest, since the survey also revealed that people were interested in learning more, particularly when it comes to medicine safety and personalized medicines. Pharmacoeconomics, followed by regulation, seemed to be the areas of least interest for respondents. There was also fairly low interest in learning more about clinical trials and the authors note that this could be linked to negative media stories. The media could also have influenced other aspects of the survey. The authors write, “Interest in medicines safety may reflect concern about side effects and the fact that all members of the sample are likely to have taken medicines at some point. Interest in personalized and predictive medicine may reflect the recent expansion of press and television coverage of these areas or, in the case of this survey, reports of Angelina Jolie’s healthcare decision regarding her genetic risk of breast cancer may have raised awareness, as this was a prominent story at the time this survey was administered (May/June 2013).”
In terms of who is and who isn’t interested in medical research, women express greater interest in learning more about all aspects of R&D than men. Those aged 65 years and older were interested in learning about a range of topics including safety, patients’ roles and responsibilities, personalized medicine and regulation. Younger people were more interested in personalized medicine.
According to the researchers, previous studies have explored public interest on clinical research but this is the first time that medicine research has been looked at holistically. Going forward, the team believe it would be useful to explore the views of those who aren’t interested in learning more about medicines, to find out why. The study also shows that EUPATI may have a role to play in stimulating public interest.
- S. Parsons et al., “What the Public Knows and Wants to Know about Medicines Research and Development: A Survey of the General Public in Six European Countries,” BMJ Open, DOI: 10.1136/bmjopen-2014-006420 (2015).
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