Public views on antimicrobial resistance

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1 Public views on antimicrobial resistance Version 1.0 November 2014

2 Table of Contents Public views on antimicrobial resistance 1 Executive Summary Introduction Public views Analysis of views Gap analysis... 8 Appendix 1: summary of sources of information... 9 Appendix 2: further references...10 i

3 This report is a review of information on the views and values of the public on antimicrobial resistance available at time of writing, November It provides a snapshot of public views and is a live document, open to comments and additions. The report will be useful to those interested in the public s views on new and emerging areas of science and technology and is particularly targeted to assist those involved in policy involving science and technology as they provide a background to what is already known about public views. It is worth noting that this report focuses on a high-level account of public views summarised across various different engagement methodologies. It does not intend to capture the nuances or reasoning behind those methodologies. The views and values of the public will change and new information will become available. Hence, we welcome your views, insights or comments. Do you know of further evidence which we should include? Do you have any comments or suggestions to improve the report? You can comment here. This report, and the others in the series, has been produced by Sciencewise. The author is Louis Stupple-Harris, British Science Association and he can be reached at enquiries@sciencewiseerc.org.uk. Sciencewise is a BIS funded programme to encourage the more widespread use of public dialogue in policy involving science and technology. Sciencewise provides advice and guidance to help those involved in the development of policy to understand and to take into account the views and values of the public in the development of policy involving science and technology. Sciencewise is able to provide: Advice and guidance on public dialogue and engagement. Assistance with the implementation of engagement as appropriate Financial support for the implementation of selected public dialogue projects Training and mentoring to assist those involved in policy development to build their understanding of the benefits and their confidence around engagement with the public. Sciencewise would like to thank Amitti CanagaRetna, Department of Health Helen Kuhlman, Technology Strategy Board Mike De Silva, Department of Health Andrew Acland, Sciencewise Dialogue and Engagement Specialist for taking the time to review draft versions of this report and for all their useful comments and insights. ii

4 1 Executive Summary Antibiotics have saved countless lives and helped to extend the average lifespan by 20 years, but the infectious organisms they are designed to treat are developing resistance to them, making the drugs less effective. The problem of resistance has been described as a catastrophic threat that requires immediate, global action. It is considered by the Government as one of the biggest threats of our time. Resistant bacteria can arise spontaneously through random genetic mutations, and the use of antibiotics in humans and animals puts selective pressure on bacteria to evolve resistance. As a result, minimising the use and misuse of antibiotics has become a priority for healthcare providers, and the Department of Health has published a strategy for tackling antibiotic resistance. The strategy aims to improve knowledge about antibiotic resistance in clinicians and the public, conserve the effectiveness of existing antibiotic medications and support the development of new ways to tackle infectious disease. The strategy also advocates for the responsible use of antibiotics in livestock. Responsibility for preventing the overuse and misuse of antibiotics lies with both clinicians and patients, so it is vital to understand attitudes and behaviour in this area. Public opinion has been collected through a number of surveys, outlined in Appendix 1. The main conclusions from this review are that: 1. The proportion of the public that believe antibiotics can kill viruses remains constant at around four in ten. Available data do not show a substantial change in this level in recent years. 2. Public expectation of antibiotics remains widespread, with around half of people visiting their GP expecting a prescription of antibiotics at least occasionally. 3. Correct antibiotic protocols are widely understood and people know that they should complete a full course of the prescription. A large majority are aware of the problem of antimicrobial resistance and that unnecessary use increases the likelihood of resistance developing. Public interest in antimicrobial resistance was demonstrated in June 2014 when it was selected in a national public vote as the focus of Longitude Prize 2014, but detailed information about personal motivation and attitudes to antibiotic restriction are lacking. 4. Increased investment in the development of antibiotics is desired, with a joint approach between government and private business preferred. Some feel that individuals should be held responsible for using antibiotics correctly, and yet others are concerned about a paternalistic approach to reminding patients. 5. Younger people are more likely to be willing to use a diagnostic test at home to determine whether antibiotics are appropriate before visiting their GP. 6. A greater understanding of antimicrobial resistance and antibiotic protocols is associated with poor compliance with prescription instructions. This shows that the relationship between understanding and behaviour is not straightforward and requires further investigation to ensure proper targeting of future campaigns. This review has found that more data is required to determine attitudes to the greater restriction of antibiotics advocated in the UK s strategy, as well as the use of antibiotics for livestock, hygiene protocols for tackling bacteria and the spread of resistance through international travel. These areas have therefore not been explored in detail. 2 Introduction Antibiotics are a group of over 100 medications that are used to treat or prevent bacterial infection. They can be used on a wide variety of conditions including chest infections, septicaemia and 1

5 meningitis 1. Antibiotics are a type of antimicrobial agent, along with medications that treat infections caused by fungal, viral or parasitic microorganisms. The first antibiotic, penicillin, was discovered by Alexander Fleming in Since then, antibiotics and vaccines have added an average of twenty years to our lives 2 through their use in health systems across the globe. Some microorganisms are resistant to attack by some antimicrobials 3. may arise spontaneously through mutation or by transferring resistance genes between them. Using antimicrobials accelerates this process by putting pressure on microorganisms to evolve resistance. This means that high rates of antibiotic prescription and use increase the likelihood that bacterial infections will become increasingly more difficult to treat. Dame Sally Davies, Chief Medical Officer for England, stated in 2013 that 4 : Antimicrobial resistance poses a catastrophic threat. If we don t act now, any one of us could go into hospital in 20 years for minor surgery and die because of an ordinary infection that can t be treated by antibiotics. And routine operations like hip replacements or organ transplants could be deadly because of the risk of infection. Mutual responsibility Incorrect use of antibiotics, such as not completing a full course or self-administering without a prescription, can also speed up resistance. Minimising the development of resistance therefore requires cooperation from patients as well as medical professionals, so it is vital to understand public attitudes to antibiotics and antimicrobial resistance. Research into new antibiotics has declined in recent decades, hindered by regulatory and market forces 5. The discovery of new antibiotics is a long and costly process and pharmaceutical companies receive a low return on investment compared to drugs that are prescribed for use over a long period of time. Additionally, the development of new antibiotics does not guarantee long-term protection from bacteria that are resistant to those used now. Longitude Prize 2014 Public interest in antimicrobial resistance was demonstrated in June 2014 when it was selected in a national public vote as the focus of Longitude Prize The Prize promises a reward of up to 10m to the creator of a new diagnostic test to find out whether an infection is caused by bacteria and therefore requires antibiotic treatment. It is hoped that faster and more accurate diagnostic information will help medical professionals prescribe the correct type of antibiotic the first time, reducing the opportunity for resistance to develop and in turn improve patient outcomes. The Prize has captured the public imagination and stimulated a conversation about how innovation in this area is organised and funded. Policy context The Department of Health published the five-year Antimicrobial Strategy in 2013, outlining plans to slow the development of resistance 7. These include commitments to: 1 NHS Choices, "Antibiotics," 2 WHO/Europe, "Self-Prescription of Antibiotics Boosts Superbugs Epidemic in the European Region," 3 WHO, "Antimicrobial," 4 Department of Health, "Antimicrobial Poses catastrophic Threat, Says Chief Medical Officer," 5 P. D. S. Davies, J. Grant and M. Catchpole, The Drugs Don t Work (Penguin Special): A Global Threat Penguin Books Limited, 2013). 6 Nesta, "Antibiotics Longitude Prize 2014," 7 Department of Health, "UK 5 Year Antimicrobial Strategy 2013 to 2018," 2

6 Improve the knowledge and understanding of antimicrobial resistance through better information, intelligence, supporting data and developing more effective early warning systems to improve health security. Conserve and steward the effectiveness of existing treatments through improving infection prevention and control and development of resources to facilitate optimal use of antibiotics in both humans and animals. Stimulate the development of new antibiotics, diagnostics and novel therapies by promoting innovation and investment in the development of new drugs and ensuring that new therapeutics reach the market quickly. The Government also supports European Antibiotic Awareness Day, a campaign to increase understanding about antimicrobial resistance in medical professionals and the public 8. 3 Public views The views and values of the public summarised below are identified using the sources detailed in Appendix 1. The main sources of public views were compiled through online research and are from the last ten years. Aside from one public dialogue, there has not been a deliberation with the public on any aspect of antimicrobial resistance, and the majority of the data are gathered through surveys. Most research in this area focuses on public knowledge levels around which types of infection are susceptible to antibiotics, how they should be used and who has responsibility to prevent antimicrobial resistance. Sources of data The main sources of data are summarised below: Nesta Survey: To coincide with the launch of Longitude Prize 2014, Nesta ran a survey on issues around antibiotics in August The survey had 1,074 adult respondents across the UK. YouGov Survey: YouGov ran a survey in July 2014 in reaction to the Prime Minister s 2014 statement on antibiotics. The survey had 2,095 adult respondents across the UK. Public Health England Survey: Public Health England (PHE) ran a survey in January 2014 in collaboration with Ipsos MORI. The survey had 1,625 respondents aged 15 and over, from across the UK. Royal Society of Chemistry Survey: The Royal Society of Chemistry (RSC) ran a survey in November 2013 in collaboration with Ipsos MORI to coincide with European Antibiotics Awareness Day. The survey had 2,033 respondents aged 15 and over, from across the UK. Special Eurobarometers 338 and 407: Two European Union-wide surveys were run by the European Commission Directorate-General for Health and Consumers in 2009 and They had 26,780 and 26,761 EU respondents respectively, of which 1,314 and 1,322 lived in the UK and were aged 15 or over. Hearing and Being Heard - The public s views on their future involvement in policymaking related to emergent science and technology: A report from a public dialogue on behalf of BIS and Sciencewise, delivered by Ipsos MORI in August The groups discussed a variety of issues in science and technology policy, including the possibility of restrictions on antibiotic prescription. The groups had 43 UK adult participants. 8 Public Health England, "European Antibiotic Awareness Day: 2014 Resources," 3

7 Health Protection Agency Survey: A survey was run by the UK s Health Protection Agency (HPA, now part of Public Health England) in January The survey had 1,767 respondents across England. Don't wear me out--the public's knowledge of and attitudes to antibiotic use: A survey was run by the Office of National Statistics (ONS) and the Department of Health in The survey had 7,120 adult respondents across the UK. Summary of views The views of the respondents in these surveys can be split broadly into the following categories. Knowledge of the purpose of antibiotics: Respondents in seven of the surveys were asked whether they thought antibiotics could be used to treat viral infections 9,10,11,12,13,14,15. It is not possible to directly compare the results of these surveys as the questions were worded differently, asking Should antibiotics be used to treat a viral or bacterial infection? 16 or Do antibiotics kill viruses? 17. The proportion of UK adults answering this question correctly varied between 50% and 64%. The Eurobarometer (50% in and 52% in ) and YouGov (54% in ) showed the lowest knowledge levels, while PHE (60% in , ONS (62% in ), the RSC (61% in ) and Nesta (64% in ) found higher results. Expectation of and insistence on antibiotic prescriptions: Two surveys asked respondents about whether they expected to be prescribed antibiotics when they visited their family clinician. In the HPA survey in 2011, 53% of respondents who contacted a doctor or nurse expected to receive antibiotics 25. When asked how often they expect to be prescribed antibiotics at their local GP surgery, respondents in Nesta s survey in 2014 answered as in Figure Office for National Statistics - Department of Health, "Don t Wear Me Out--the Public's Knowledge of and Attitudes to Antibiotic use." (2003). 10 Nesta, "Antibiotics Survey (August, 2014). 11 Public Health England, Entrenched Misconceptions about Antibiotics Revealed in New Survey 12 Royal Society of Chemistry, "Antibiotics: A Cure for the Common Cold?" (2013). 13 EC Directorate-General for Health and Consumers, "Special Eurobarometer 338: Antimicrobial " (December, 2009). 14 EC Directorate-General for Health and Consumers, "Special Eurobarometer 407: Antimicrobial " (November, 2013). 15 YouGov, "Antibiotics Survey (July, 2014). 16 Nesta, Antibiotics Survey 17 EC Directorate-General for Health and Consumers, Special Eurobarometer 338: Antimicrobial 18 EC Directorate-General for Health and Consumers, Special Eurobarometer 338: Antimicrobial 19 EC Directorate-General for Health and Consumers, Special Eurobarometer 407: Antimicrobial 20 YouGov, Antibiotics Survey 21 Public Health England, "Entrenched Misconceptions about Antibiotics Revealed in New Survey," 22 Office for National Statistics - Department of Health, Don t Wear Me Out--the Public's Knowledge of and Attitudes to Antibiotic use. 23 Royal Society of Chemistry, Antibiotics: A Cure for the Common Cold? 24 Nesta, Antibiotics Survey 25 Health Protection Agency, Antibiotics Survey 26 Nesta, Antibiotics Survey 4

8 6% of respondents in Nesta s survey also reported having insisted that their GP prescribe antibiotics to them, even if they were reluctant to do so 27. This pressure has also been reported in a 2014 survey of GPs by Nesta, in which 90% of respondents reported feeling pressured by patients to prescribe antibiotics 28. Correct use of antibiotics: There is widespread knowledge of the need to use antibiotics correctly, with 97% of ONS respondents aware that antibiotics should not be taken unnecessarily 29, and 78% surveyed by the RSC reporting that they always take the full course 30. However, 7% usually stop taking the course when they feel better. 18% of those surveyed told YouGov that they have stopped taking a course of antibiotics at least once because they began to feel well % of those surveyed by both the HPA and RSC reported keeping leftover antibiotics 32,33. 7% of YouGov respondents had taken a course of antibiotics that wasn t prescribed 34. In the survey conducted by PHE, almost four in ten 15 to 24 year olds reported taking antibiotics that were not prescribed for them, compared to fewer than 1 in 10 people over 25 years old 35. Awareness of the problem of antimicrobial resistance: There is also widespread knowledge of the problem of antimicrobial resistance. The HPA found that 79% of respondents were aware of the problem 36. Both the 2009 and 2013 Eurobarometer surveys found that 89% of respondents knew that unnecessary use of antibiotics would make them become ineffective 37,38. Funding research into new antibiotics: A large majority of respondents in the RSC s survey feel that the Government has a responsibility to invest in the development of new antibiotics 39. When asked who should be providing this funding, they answered as in Figure Nesta, Antibiotics Survey 28 Nesta, " Benefit of the Doubt is the Basis for Prescribing Antibiotics, Finds Longitude Survey," 29 Office for National Statistics - Department of Health, Don t Wear Me Out--the Public's Knowledge of and Attitudes to Antibiotic use. 30 Royal Society of Chemistry, Antibiotics: A Cure for the Common Cold? 31 YouGov, Antibiotics Survey 32 Health Protection Agency, Antibiotics Survey 33 Royal Society of Chemistry, Antibiotics: A Cure for the Common Cold? 34 YouGov, Antibiotics Survey 35 Public Health England, Entrenched Misconceptions about Antibiotics Revealed in New Survey 36 Health Protection Agency, Antibiotics Survey 37 EC Directorate-General for Health and Consumers, Special Eurobarometer 338: Antimicrobial 38 EC Directorate-General for Health and Consumers, Special Eurobarometer 407: Antimicrobial 39 Royal Society of Chemistry, Antibiotics: A Cure for the Common Cold? 5

9 The RSC also found that 74% agreed that without a major research and development effort to create new antibiotics we will not be able to fight infectious disease epidemics in the future. Restriction of antibiotic prescriptions: During a set of focus groups organised by Ipsos MORI, participants discussed a wide range of science policy issues and expressed strong opinions about the restriction of antibiotic prescription. During a conversation about restricting or monitoring antibiotic use, they summarised the issues raised as follows 40 : Many participants argued that individuals need to take responsibility for things like finishing a course of antibiotics some did not see this as an area where government involvement was desirable. When participants started talking about public health they talked in the language of resource allocation and fairness. Some felt it might be challenging, even unfair, to ask the public to behave in ways which might be in the public interest, but might not be in the individual s interest (for example doctors reducing prescriptions of some antibiotics for a time). While they wanted to be involved in discussions on the morals and principles underlying public health decision making, they did not necessarily feel that the public should be the ultimate decision makers on these topics, because they felt each individual might hold his or her own bias. Some went as far as saying that an app providing reminders was paternalistic. Most participants agreed that education was important the public need to understand the consequences of their actions and their wider impact. Participants paid particular attention to the example of finishing antibiotics courses, perhaps because it was better understood than the other examples providing more information about other ways to reduce antimicrobial resistance and discussing the desired level of investment in those may help to ensure the debate is well-rounded. Framing the discussion more explicitly as a debate about individual freedom versus collective benefit may be constructive. 40 Sciencewise, " Hearing and being Heard - the Public s Views on their Future Involvement in Policy- Making Related to Emergent Science and Technology " (August, 2013). 6

10 Novel diagnostic tools: There is some support for the use of novel diagnostic tools at home. When asked if they would be willing to use a test at home to determine whether antibiotics were appropriate, 38% of respondents in Nesta s survey reported that they would 41. The level of acceptance was highest among those aged (54%) and lowest among those aged 65 and over (22%). The relationship between understanding and behaviour: There is some evidence that a greater level of knowledge and understanding of issues around antibiotics and antimicrobial resistance does not always increase correct use of prescribed antibiotics. According to a survey by the ONS, more knowledge about antibiotics was associated with being more likely to finish a course 42. However, people who knew more were also more likely to take antibiotics without being told to do so and more likely to obtain antibiotics in another country without a prescription. In female respondents to the same survey, more knowledge about antibiotics was associated with being more likely to give antibiotics to someone else that were not prescribed to them. 4 Analysis of views Despite high levels of knowledge about antimicrobial resistance and the correct use of antibiotics, many survey respondents reported poor concordance with prescription instructions. This implies that the respondents in these surveys are taking into account other external pressures when making decisions about their use of antibiotics, and a review of the literature suggests that the body of current research is insufficient to explain this. Although 78% of respondents in Nesta s survey and 88% in PHE s survey reported trusting their GP to accurately diagnose their condition, a small number of respondents said that they had insisted on a prescription of antibiotics, even if their clinician was reluctant to prescribe them 43,44. Across these surveys, most respondents were aware of the issue of antimicrobial resistance 45,46 and that poor compliance with prescription instructions could increase the likelihood of antibiotics becoming ineffective 47,48. Most respondents felt that without significant investment in the development of antibiotics, we will not be able to fight infectious disease in the future 49. Most respondents felt that both the Government and private companies are responsible for that investment. Smaller groups thought that Government or private companies alone should bear the responsibility. Issues were raised around the responsibility of individuals, and some respondents felt that individuals should not be making decisions about these issues because they felt each individual may hold their own biases 50. At the same time, some felt that individuals should be responsible for their own actions, and that Government intervention was undesirable. The example of a service that provided reminders to take medication was described as paternalistic by some. One study found that a greater level of understanding and knowledge about antibiotics is associated with poorer compliance with disposal guidelines and a greater likelihood of non-prescription use of 41 Nesta, Antibiotics Survey 42 Office for National Statistics - Department of Health, Don t Wear Me Out--the Public's Knowledge of and Attitudes to Antibiotic use. 43 Public Health England, Entrenched Misconceptions about Antibiotics Revealed in New Survey 44 Nesta, Antibiotics Survey 45 Royal Society of Chemistry, Antibiotics: A Cure for the Common Cold? 46 Health Protection Agency, "Antibiotics Survey (January, 2011). 47 EC Directorate-General for Health and Consumers, Special Eurobarometer 338: Antimicrobial 48 EC Directorate-General for Health and Consumers, Special Eurobarometer 407: Antimicrobial 49 Royal Society of Chemistry, Antibiotics: A Cure for the Common Cold? 50 Sciencewise, Hearing and being Heard - the Public s Views on their Future Involvement in Policy- Making Related to Emergent Science and Technology 7

11 antibiotics 51. This indicates that any future communication campaigns would need to be sensitive to the opinions of individuals and understand their motivation. It is clear that further engagement is required to clarify these complex attitudes. 5 Gap analysis The magnitude of antimicrobial resistance and its impact upon society highlights the necessity and value of fully understanding public attitudes. The published information compiled in this report provides a brief overview of the general and common aspects of public attitudes but deeper understanding of attitudes towards antimicrobial resistance and associated behaviours that can guide future implementation of policy decisions is lacking. Whilst the selection of antimicrobial resistance for the Longitude Prize demonstrates public interest in the issue of antimicrobial resistance, there is limited evidence of the level of public understanding regarding the process of improving technologies in this area. More detailed information about public attitudes to pharmaceutical funding could inform decisions on stimulating innovation in antibiotic research. Particular areas which have not yet been explored through public dialogue include: Public views and values on hygiene practices that have the potential reduce the spread of resistant-bacteria, e.g. hand-washing and surface decontamination. Antibiotic use in food (livestock) production the views of the public as potential consumers. Patient and public attitudes towards the implications arising from tighter controls on antibiotic prescribing. This is an area where many key policy decisions have been made. However there is an important ongoing role for public dialogue in the continued development and improvement of these policies as the technology and associated issue develops. 51 Office for National Statistics - Department of Health, Don t Wear Me Out--the Public's Knowledge of and Attitudes to Antibiotic use. 8

12 Appendix 1: summary of sources of information Title Type Produced/delivered by Date Outline Antibiotics survey Survey Nesta, Populus Aug 2014 Antibiotics survey Survey YouGov Jul 2014 Antibiotics survey Antibiotics: a cure for the common cold? Special Eurobarometer 407: Antimicrobial Hearing and Being Heard - The public s views on their future involvement in policy-making related to emergent science and technology Antibiotics survey Special Eurobarometer 338: Antimicrobial Don't wear me out--the public's knowledge of and attitudes to antibiotic use. Survey Royal College of General Practitioners, Ipsos MORI Survey Royal Society of Chemistry, Ipsos MORI Survey EC Directorate-General for Health and Consumers, TNS Opinion & Social Public BIS, Sciencewise, Ipsos dialogue MORI Jan 2014 Oct- Nov 2013 Nov 2013 Aug 2013 Survey Health Protection Agency Jan 2011 Survey EC Directorate-General for Health and Consumers, TNS Opinion & Social Survey Office for National Statistics, Department of Health Dec 2009 Survey of 1074 UK adults. Face to face quantitative research. Survey of 2095 UK adults. Face to face quantitative research. Survey of 1625 adults. Face to face quantitative research. Survey of 2033 UK participants aged 15 and over. Face to face quantitative research. Survey of EU citizens, including 1314 UK citizens aged 15 and over. Focus groups with 43 UK adults covering a range of science and technology policy issues. Face to face public dialogue. Survey of 1767 adults in England. Face to face quantitative research. Survey of EU citizens, including 1322 UK citizens aged 15 and over Survey of 7120 UK adults. Face to face quantitative research. 9

13 Appendix 2: further references Public views on antimicrobial resistance Davies, P. D. S., J. Grant, and M. Catchpole. The Drugs Don t Work (Penguin Special): A Global Threat Penguin Books Limited, Department of Health. "Antimicrobial Poses catastrophic Threat, Says Chief Medical Officer.", "UK 5 Year Antimicrobial Strategy 2013 to 2018.", EC Directorate-General for Health and Consumers. "Special Eurobarometer 338: Antimicrobial " (December, 2009).. "Special Eurobarometer 407: Antimicrobial " (November, 2013). Health Protection Agency. "Antibiotics Survey (January, 2011). Nesta. " Benefit of the Doubt is the Basis for Prescribing Antibiotics, Finds Longitude Survey., "Antibiotics Longitude Prize 2014., "Antibiotics Survey (August, 2014). NHS Choices. "Antibiotics., Office for National Statistics - Department of Health. "Don t Wear Me Out--the Public's Knowledge of and Attitudes to Antibiotic use." (2003). Public Health England. "Entrenched Misconceptions about Antibiotics Revealed in New Survey., "European Antibiotic Awareness Day: 2014 Resources., Royal Society of Chemistry. "Antibiotics: A Cure for the Common Cold?" (2013). Sciencewise. " Hearing and being Heard - the Public s Views on their Future Involvement in Policy- Making Related to Emergent Science and Technology " (August, 2013). WHO. "Antimicrobial., WHO/Europe. "Self-Prescription of Antibiotics Boosts Superbugs Epidemic in the European Region., YouGov. "Antibiotics Survey (July, 2014). 10

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