Science and Technology Committee Inquiry Into Science Communication

Science and Technology Committee inquiry into Science communication

Response from Alzheimer’s Research UK

April 2016

1. Introduction to Alzheimer’s Research UK

• Alzheimer’s Research UK (ARUK) is the UK’s leading research charity aiming to defeat dementia. We fund world-class, pioneering research, focusing on the prevention, diagnosis, treatment and cure of the diseases that cause dementia. We are energising a movement across society to support, fund and take part in dementia research. Our funding is directed towards both translating scientific discovery into patient benefit and in growing the research base. Our ultimate goal is a preventative treatment or intervention for neurodegenerative diseases.

• We welcome the opportunity to respond to this inquiry, and we have shared below our experience of and recommendations for scientific communications with reference to our specialist knowledge of dementia.

1. Executive Summary

While the majority of the general public seems to be interested in science and medical research, in the case of dementia there are still a number of prevalent misunderstandings which science communication is well placed to dispel.

Some of the greatest misunderstandings among the public from media portrayals of research come from the assumption of causality from research studies looking at associations. These often make the headlines in relation to particular foods or activities that could slow or prevent dementia. Greater clarity in media reporting of the limitations of association studies would go a long way towards helping the public to better understand the research they’re reading about and the likely impact on their own lives.

The government should continue to recognise the potential for working with charities, who have unique relationships with their supporters and the public and are therefore well placed to engage in, and help deliver, public messaging.

The public can sometimes feel that science takes place “behind closed doors” and there is an appetite for opportunities that help people increase their understanding of medical research.

The prevalence of dementia and the fear surrounding it createsa large audience likely to already engage, or want to engage, with science and medical research. It is vital that science communication meets the needs and interests of this audience.

Due to the predicted rise in cases of dementia owing to an ageing population, but increasing evidence that it may be possible for people to lower their risk of dementia by maintaining a healthy lifestyle, effort is also needed to engage new audiences.

Scientific organisations, researchers and the media alike share the responsibility for ensuring that science coverage is accurate, balanced and accessible.

Government strategies to foster public engagement with science have so far proved effective when it comes to dementia, and it is essential that the momentum behind such initiatives be maintained.

1. Trends in public engagement with science

• The majority of the general public seems to be engaged with science at a basic level, with the latest Wellcome Trust Monitor survey finding that 77 per cent of people are interested in medical research generally, in particular new drugs and treatments or discoveries about how the body and brain work[1].

• Despite this engagement with medical research, in the case of dementia there are a number of myths and misunderstandingswhich perpetuate among the general public. Our research has found that only 23% of people recognisethat dementia is caused by brain diseases, and only 25% of people think they can reduce their risk of dementia.Accessible, accurate science communications can dispel these myths and ensure that people fully understand the condition and its causes.

• The Wellcome Trust Monitor also found that there has been an overall decline in trust in institutions responsible for disseminating medical research information, especially medical research charities where trust has declined from 60 per cent in 2012 to 37 per cent in 2015[2]. Respondents were not asked to give reasons for this lack of trust, but it is clear that charities have to work harder than ever to gain the trust of the public and their supporters.

• In 2011, the Public Understanding of Science survey suggested that over half (54%) of people felt researchers were not well regulated and could ‘do want they wanted behind closed doors’[3] and this number has not changed significantly in the survey results for 2014[4]. This suggests that the public mayfeel that science is not always transparent.Not everybody has the opportunity to visit a laboratory or speak to scientists first-hand, and for many people the only time they come into contact with scientific research is when findings are disseminated through the media.Encouraging scientists to talk openly about their work and engage with the community will help to address this perception.

• The public response to ARUK’s Dementia Lab, an online resource which allows the user to understand the intricacies of basic research, treatment development and clinical trials, suggests that there is demand for opportunities which help people increase their understanding of medical research. The website won the Association of Medical Research Charities’ Science Communications Award in 2014 for its innovative use of design to explain the research journey, including a discussion around the use of animals in research. The Lab has been visited by over 140,000 users since its launch in July 2013 and now forms an integral part of our children and teens’ website

• One of the challenges faced by funders of dementia research is the lack of tangible success stories. The last drug treatment for Alzheimer’s was licensed almost 15 years ago and while the public is seeing new treatments and diagnostics entering clinical practice in areas like cancer, dementia research is playing catch-up. It’s vital that we help the public to understand the research process and the investment in basic science, infrastructure and capacity that is needed to deliver breakthroughs that translate through to patients. As research funders we need to work harder to tell these success stories and show the public that current research efforts are making a difference.

1. The balance of effort needed to increase public engagement in science by 'new audiences' and by the 'already interested'

• There are currently an estimated 850,000 people living with dementia[5] and 700,000 friends and family members caring for a person with the condition[6] in the UK. Over 24 million people know a family member or friend with dementia.

• Dementia is also the most feared condition among the over-60s, with 52% of those aged60 and over saying that Alzheimer's disease is the thing they are most concerned about in their later years[7].

• Theprevalence of the condition and the fear surrounding it creates a large audience likely toalready engage, or want to engage, with science and medical research. It is therefore vital that information presented through scientific organisations, via public health campaigns and in the media meets the needs and interests of this audience. This includes information on risk reduction, symptoms, diagnosis, treatments, and signposting to care and support services.

• It is also important to ensure that opportunities to take part in medical research are communicated via various channels. Research from the National Institute for Health Research suggests that 89% of people would be willing to take part in clinical research if they were diagnosed with a medical condition or disease[8], and our own research suggests that although 62% of people would be willing to take part in dementia research, more than 80% said they wouldn't know how.

• In addition to engaging with a readily interested audience, effort is also needed to engage new audiences with science and health communications.

• By 2025 the number of people living with dementia is expected to rise to over one million and by 2050 it is projected to exceed 2 million[9].Although age is the biggest risk factor, after accounting for non-independence between risk factors, around a third of Alzheimer’s diseases cases worldwide might be attributable to potentially modifiable risk factors[10]. The risk factors for cardiovascular disease are also risk factors for dementia, which means that leading a healthy lifestyle and taking regular exercise may help lower the risk of both cardiovascular diseases and dementia.

• The predicted increase in prevalence combined with the possibility that the public might be able to reduce their risk of developing the condition makes increased engagement more important than ever, whether through targeted communications, inclusion in general scientific programming or through public health initiatives which target a wide range of medical conditions.

• Engaging the public with science should be an open debatethat doesn’t make the non-scientist feel in any way ‘lesser’ or ‘ignorant’. The recent controversy around the Natural Environment Research Council’s involvement of the public in naming its new research vessel has shown the potential for new audiences to engage with science in unexpected ways. However it has also shown how to immediately alienate that new audience, something which is undesirable however inappropriate their suggestions may be considered.

• While STEM events or science fairs are often a simple way for charities to engage with the public, they often only reach a self-selecting audience of those already ‘research-engaged’. It is important for charities to take advantage of the growth in popularity of less formal events such as the Pint of Science events, which provide science talks in pubs, as these have the potential to attract a broader audience to engage in science.

1. Improving the quality, accessibility and balance of science coverage

• Scientific organisations, researchers and the media alike share the responsibility for ensuring that science coverage is accurate, balanced and accessible. The information provided to journalists, whether through interviews or press releases, should be a full and balanced account of the research methods, findings, applications and limitations. Equally, journalists should ensure that they have fully researched their sources and asked the appropriate questions in order to present stories in a way that is accessible to the general public while remaining balanced and non-sensationalist.

• In addition to ensuring that the public receives accurate information, this method of working together allows the credibility of all parties to be maintained and improved.

We are very conscious that journalists have their own internal battles in their news organisations relating to the science stories making the news agendas and the headlines attached to stories. It’s not only important to engage with science journalists to encourage more balanced science reporting, but with newspaper editors and producers who decide on the stories that make the news, choose the guests and write the headlines. This is a much broader engagement challenge – engaging non-specialist members of the news media with scientific issues, when it may not be an area of interest to them at all and they have many competing priorities.

• The ability to convey scientific research to a lay audience is becoming increasingly important for researchers in today’s world. The skill of communicating complex science in simple terms has benefits not only in public engagement but in forming multi-disciplinary collaborations, communication between partners involved in commercialisation of research findings, and influencing policy decisions and recommendations. However, often it is the researchers best at communicating who areheard the most, and it is important to support all researchers in seeing the value of good communication and developing the skills to be able to engage people with science at all levels. This will ensure balanced and sensible debates in all areas of science. Funders have an important role to play in ensuring that all researchers have the skills to engage people with their work.

• Alzheimer’s Research UK uses its blog to write ‘Behind the headlines’ blogs on research stories that may be particularly sensitive, complex, or have been taken out of context by the media. This approach is also used successfully by NHS Behind the Headlines[11]. Alzheimer’s Research UK’s Dementia Research Infoline allows the public to call or email with any questions regarding research and we often answer queries from the public in response to articles that have been read in the newspapers.

• Some of the greatest misunderstandings among the public from media portrayals of research come from the assumption of causality from research studies looking at associations. These often make the headlines in relation to particular foods or activities that could slow or prevent dementia. Greater clarity in media reporting of the limitations of association studies would go a long way towards helping the public to better understand the research they’re reading about and the likely impact on their own lives.

1. The strategies and actions being taken by Government to foster public engagement with science

• Government strategies such as the Prime Minister’s Challenge on Dementia 2020, funding for the UK’s first Dementia Research Institute and funding for the Dementia Friends initiative have helped to foster increased engagement with dementia research, not only with the general public but with researchers and pharmaceutical companies.

• Join Dementia Research, a national initiative launched by NIHR in partnership with Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland has already successfully supported almost 14,000 members of the public to volunteer to take part in research and is helping to break down perceived barriers between ‘researchers’ and ‘the public’. The Prime Minister’s Challenge on Dementia 2020 Implementation Plan includes a commitment to greatly increase the number of people with dementia participating in research by 2020, with 25 per cent of people diagnosed with dementia registered with Join Dementia Research and 10 per cent per cent of people diagnosed with dementia participating in research.

• The aims of the One You campaign are laudable, and if successful the campaign will not only foster greater engagement with health and science but will help to address preventable diseases in adults.

• It isessential that the momentum behind such initiatives be maintained to keep the UK at the forefront of dementia research, continue to communicate new findings in an accessible and accurate way, and to ensure that public engagement with the condition does not diminish.

• The government should continue to recognise the potential for working with charities, who have unique relationships with their supporters and the public and are therefore well placed to engage in, and help deliver, public messaging.

1. Contact Details

• If you have any queries, or would like to discuss any of our responses in more detail, please contact Emily Cook on 01223 896618 or .

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