The Wellcome Trust Monitor documents the views of adults and young people in the UK about science and medical research. The survey is conducted every three years, in order to capture how public opinion is changing over time and also identify areas of success and failure for those providing information to the public. The first Monitor survey – Wave 1 – was carried out in 2009, and the Wave 2 survey was carried out in 2012.
Wave 2 was conducted by Ipsos Mori, with representatives going door-to-door to ask 1856 members of the public a total of 241 questions. In addition to questions about science and medical research, the survey included questions on the respondents’ qualifications, socio-economic status, and religious beliefs to ensure that the group surveyed was an accurate representation of the current UK population.
Respondents were asked about their understanding of a series of scientific terms to gauge their existing knowledge. While up to 48% of adults and 60% of young people (aged 14-18) felt they had a good understanding of the term “DNA”, only 12% of adults and 11% of young people felt they understood the term “human genome”. Given the pace of genomic research is increasing and being translated into treatments in the clinic, this identifies an area where medical research charities and science journalists need to redouble efforts to provide information for the public. To this end, the Genetic Alliance has published an Understanding Genetics Handbook for patients, and the NHS has recently released a free e-book on Translational Genomics.
Underscoring the importance of science communication, of the 460 young people asked what encouraged them or discouraged them about studying science, teaching quality was the most common answer, proving to be of higher importance than interest in the subject. This is also true in the US, where the professional development of science teachers is currently under reform (Wilson et al., 2013).
A major theme of the survey was where people look for medical information, and which sources they view as most trustworthy. Unsurprisingly, the internet was the primary source of medical information for 87% of people. However, of the over 65 demographic, a third do not use the internet. As this age bracket is likely to be in most need of health information, more effort needs to be made to encourage older people to use the internet, or to get information to them via a different route. The most common reason for adults to look for medical information was because they or a friend or relative was ill, while the most common reason for young people was because it was relevant to their studies.
Regarding which information sources people trusted, medical professionals, academics and medical research charities were the most trusted sources of information, with more than 60% of respondents saying they had a great deal of trust in these groups and individuals, whilst journalists and politicians were the least trusted with around half of all respondents saying they had very little trust in these individuals. These data closely reflect those of a similar study in the US which found that for 8586 individuals with Multiple Sclerosis, the primary source of information was the internet, and the most trusted source of information was their physician (Marrie et al., 2013).
Respondents were also asked about medical research participation and governance. 22% of adults reported that they or a member of their household had participated in medical research at some point, with over a third of these having taken a new medication or treatment. Additionally, two thirds of adults were aware of the concept of a clinical trial. Regarding approving new treatments and guiding the future direction of medical research, 91% of adults agreed that the individuals making these decisions should have a good understanding of the science involved. When asked who should be making these decisions, more than half the respondents said that academic scientists and medical research charities should be involved in this process, whereas less than a quarter said that the public and politicians should be involved.
While these are but a few of the findings from this study, these few areas do very clearly show what members of the public require and expect from medical research charities, like the BHD Foundation; namely to provide clear and accurate medical information and to be involved in the governance of medical research. The major goal of medical research charities is to improve the standard of healthcare and the quality of life available to people, through medical research. When asked whether they expected medical research to attain either of these goals within the next 20 years, over 85% of people thought that it would, meaning that the goals of medical research charities align very well with public expectation.
If you are interested in reading more about the Wellcome Trust Monitor, please visit their website here. From here you can download the complete datasets for both Wave 1 and Wave 2, and view the stunning Wave 2 infographics.
- Genetic Alliance, & The New England Public Health Genetics Education Collaborative (2010). Understanding Genetics: A New England Guide for Patients and Health Professionals. PMID: 23586107
- Marrie RA, Salter AR, Tyry T, Fox RJ, & Cutter GR (2013). Preferred sources of health information in persons with multiple sclerosis: degree of trust and information sought. Journal of medical Internet research, 15 (4) PMID: 23635393
- Wilson SM (2013). Professional development for science teachers. Science (New York, N.Y.), 340 (6130), 310-3 PMID: 23599481
www.bhdsyndrome.org – the primary online resource for anyone interested in BHD Syndrome.