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How To Write a Lay Summary

How To Write a Lay Summary 4
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Dr.PeterCena,Swaziland,Researcher
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A Digital Curation Centre ‘working level’ guide How To Write a Lay Summary Monica Duke (DCC) in collaboration with the Patients Participate project. Digital Curation Centre, 2011. Licensed under Creative Commons Attribution 2.5 Scotland: http://creativecommons.org/licences/by/2.5/scotlandHow To Write a Lay Summary Introduction Lay summaries are short accounts of research that are targeted at a general audience. They play a significant role in most research grant applications and can also be useful in supporting wider public engagement with research. Lay summaries are particularly important for research in medicine and health, and are normally a prerequisite for grant ap- plications made to the UK research councils and to medical charities. This guide will help you to understand what lay summaries are, how they are used and why they are important. It describes some general guidelines for writing lay sum- maries and explores some issues and challenges with lay summary provision. This guide should help researchers who are required to write lay summaries and organisations with an interest in public engagement with research, or those with responsibility for making research accessible. It also provides pointers to other resources to help with the writing of lay summaries. The guide draws in particular from the experience of charities involved in communicating about research in medicine and health. Why lay summaries are • Increasing the relevance of the research • Increasing recruitment to clinical research useful • Improving the design of the research to address Public engagement is a priority for funders of higher ethical concerns, improve the research tools and education, and there are expectations that universities make it easier for the people taking part can demonstrate the impact of research on the public, • Improving the quality of the data and its how they are meeting the needs of wider society, and interpretation 1 the relevance and responsiveness of their research . • Making it more likely that the findings of the As explained by the National Co-ordinating Centre for research will be used to make a difference to Public Engagement, evidence is growing that there service users’ lives. are benefits to universities, to students and staff, and to society. Methods of public engagement include In medicine and health, there is some evidence that consulting, collaborating and informing, using different when researchers get closer to patients, significant media such as presentations, podcasts and writing conversations develop about the priorities for patients, for non-specialist audiences. The benefits of public which in turn may lead to new areas of research, for engagement are particularly recognised for medical example patient-focused research related to living with and health research: 4 the condition. “If we want medical and health research to be of Finally, involving the public in research could increase real benefit to patients and their families then we the likelihood of the research findings being used by must strive to involve them more in setting the others, as the public can have a stronger commitment questions to which we are seeking answers, the way to bringing about change. in which research is conducted and, finally, how it is disseminated and put into practice. “The service user who has been involved in research is often its most powerful advocate, promoting Time and again the evidence shows that service user understanding among other service users and acting involvement results in outcomes that are more relevant as ambassadors for the charity whether it be to the and useful.” politician or the major donor.” 5 2 Simon Denegri (Chair of INVOLVE) Simon Denegri (Chair of INVOLVE) Attracting the support and confidence of the public is INVOLVE, a national advisory group funded by the UK also important to the organisations that fund research. National Institute for Health Research, reports that involving service users helps at all stages of a research Lay Summaries are one form of writing intended project, from developing the research question through to help communicate research to a non-specialist to disseminating the results. The benefits of the direct audience. They describe research in non-specialist involvement of service users in research has been 3 language and are meant for people who are not the identified as follows: 1 National Co-ordinating Centre for Public Engagement, The case for public engagement. Retrieved Mar 20 2012 from: http://www.publicengagement.ac.uk/why-does-it-matter/case-for-engagement 2 Simon Denegri, cited in: TwoCan Associates, User involvement in research: A route map. Retrieved Mar 20 2012 from: http://www.twocanassociates.co.uk/routemap/why-involve-service-users.php 3 TwoCan Associates, User involvement in research: A route map. Retrieved Mar 20 2012 from: http://www.twocanassociates.co.uk/routemap/user-involvement-in-research-projects.php 4 Association of Medical Research Charities, Natural Ground: Paths to patient and public involvement for medical research charities. AMRC, October 2009. Retrieved March 20, 2012 from: http:// www.amrc.org.uk/our-members_natural-ground:-patient-and-public-involvement-project_ppi:-natural-ground 5 Simon Denegri, cited in: TwoCan Associates, User involvement in research: A route map. Retrieved Mar 20 2012 from: http://www.twocanassociates.co.uk/routemap/why-involve-service-users.php 2immediate peers of the researcher. They can be the feasibility of the research. When patients and required as part of grant conditions, either during the carers are involved in committees reviewing funding funding application process, or at the stage when decisions, they need the lay summary to help them research results are disseminated. Lay summaries understand the research so they can take part in the are often written by researchers themselves, decision-making process. although some charities employ specialist writers for the purpose. Lay summaries are useful to the There are different models for how lay members input lay public but can also make research accessible into funding decisions – they can be members of the to professionals in nearby fields. The next sections funding panel, they can be part of a separate but of this guide provide a definition of lay summaries, parallel lay review process, or they can be involved describe some ways in which lay summaries are in commenting on the value of research projects and used, present an overview of guidelines for writing their feasibility. Some charities have patients sitting lay summaries, and consider some challenges in lay alongside the scientific members of the committee. summary writing. Others have lay members who review applications in parallel to the scientific review. At the Alzheimer’s Society, before moving on to scientific peer review, applications have to be passed by a panel of Concepts lay members who comment on and score each 6 application on its importance and research priorities of After reviewing the literature, Smith and Ashmore 10 the society. found that the most succinct definition for a lay summary was provided by INVOLVE’s People in The Arthritis Research Campaign has a USER Research programme. This defines a lay summary in 7 committee that looks at the practicality of doing the following way: research and questions the assumptions of researchers. They reported that, in one instance, “A lay summary is a brief summary of a research “our patient reviewer was the only person to spot that project or a research proposal that has been written a researcher had assumed that people would only for members of the public, rather than researchers have one artificial joint – many people with arthritis or professionals. It should be written in plain English, have more than one replacement joint, and so the avoid the use of jargon and explain any technical terms 11 suggested blood test would provide unclear results”. that have to be included.” 12 As the AMRC Natural Ground report notes, a common theme of involving patients in research activities is that patients have “invaluable experience of living with the relevant condition and so are able How lay summaries are to assess the feasibility of planned projects (even those that had been successfully peer reviewed) and used provide a ‘reality check’.” Even research that has been Lay summaries serve the general purpose of approved by research ethics committees can raise explaining research to the non-expert. There are practical issues that make the project unacceptable to different ways in which lay summaries can be used, patients asked to participate. Lay summaries provide both by members of the general public and by other an accessible way for patients to understand what researchers who are not specialists in the field of research is proposed so that they can input into the research. research process. 8 The AMRC Natural Ground report describes how The Alzheimer’s Society found that presentations at lay summaries are used by some charities. Research interview stage that had been simplified for the benefit grant applications often contain a lay summary or of lay members resulted in presentations that were abstract. This helps to explain “why the research is easier for the scientists on the panel to understand. being suggested, what researchers aim to achieve, Panel members are not always specialists in the and how this may impact on the rest of the research particular field that the applicant is working in. This community”. observation was also supported in the Patients Participate discussions with academics, where one Patients or carers are being involved in research of our participants who sits on award panels reported 9 funding decisions. They have a direct interest in that lay summaries were useful to her in her role as the outcome of the research and experience of a reviewer. Smith and Ashmore suggest that the lay the disease, and they are also able to advise on summary is a key part of the grant application, it 6 Mark Smith and Claire Ashmore, The Lay Summary in medical research proposals – is it becoming more important? Poster presentation at: Making an Impact - Annual Conference of the Association of Research Managers and Administrators, Manchester, June 2010. Retrieved March 20, 2012 from: http://www.keele.ac.uk/media/keeleuniversity/ri/istm/documents/Lay_summary_poster_final.pdf 7 People in Research, Jargon buster. Retrieved March 20, 2012 from: http://www.peopleinresearch.org/about-this-site/jargon-buster/laysumm 8 AMRC, Natural Ground, p. 11. 9 AMRC, Natural Ground, p. 8. 10 Ibid 11 AMRC, Natural Ground, p. 9. 12 AMRC, Natural Ground, p. 10. 13 Smith and Ashmore, The Lay Summary in medical research proposals. 3being the only part of many applications that a busy Grammar, punctuation and spelling 13 reviewer may ever read. Grammar and punctuation should be accurate, and spelling should follow appropriate conventions. For Lay summaries are used to describe clinical trials as example, UK spelling should be used if the text is to be part of recruiting participants. These descriptions published to a UK audience. help prospective participants to decide whether they want to be involved in clinical trials. Charities may Level of difficulty of text (words and also need to assess whether to tell service users structure) about opportunities to take part in research. Asthma The text should be written in an easily readable UK has developed policies and procedures, forms and style. The author should use short, clear sentences guidance to help describe what would be expected broken up into paragraphs for readability, and avoid from participants. complex grammatical structures where possible. The author should use everyday English words in place of Some charities use lay involvement to develop complex words. their research strategies and to ensure that they fund research that is responsive to the needs of their members. Lay members help them to define Structure research priority areas. The charities also need to The text should be ordered logically and flow naturally. communicate research progress effectively. Lay For example, ideas should be introduced as they are summaries are one of the tools that help to achieve required, and new ideas usually should not be introduced late in the text. these aims. Avoid complex or meaningless terms and phrases Many terms used in academic English are either Guidelines for writing overcomplicated or contain no useful information. Examples include terms such as ‘virtually’ or ‘literally’ lay summaries or archaic language (e.g. amidst, whilst), as well as verb choices such as ‘purchase’ used in place of the simpler Some charities and other organisations provide ‘buy’. guidelines for researchers with advice on how to write a lay summary, or more general advice on presenting information in an accessible way. In August 2011, Expressing ideas in the active voice UKOLN reviewed a selection of guidelines, collected Text should be written in the active voice (“I... you..”) by the project partners the AMRC and the British and second person (“you”) should be used in place Library during discussions held with stakeholders in of third person (“he/she”). For example: “You will have the Patients Participate project (see box), alongside chemotherapy” rather than “Chemotherapy will be given to you”. other advice for writing lay summaries. Positive phrasing The guidance in those documents has been Sentences should be phrased positively, rather synthesised and is presented below. These guidelines than negatively. For example, “You will have repeat can be presented as heuristics to ask questions appointments at least once a fortnight”, rather than “The about a lay summary, i.e. asking whether a given usual practice is not to schedule repeat appointments more summary meets these criteria. Other sources of help frequently than once a fortnight”. that are available include example lists for some of the guidelines, such as lists of plain English words, guidelines provided by charities, and information and Adhering to convention resources made available by organisations with a The text should have the correct word count and remit to promote public engagement. These sources the author should structure it according to relevant are listed in the further information section at the end guidelines (such as funder’s guidelines). of this guide. Straightforward to read The writer should limit the memory load on readers – Characteristics of a summary don’t ask them to remember too much jargon/abstract information. document (lay summary) Clear theme Appropriateness for readership A good and relevant title should be provided, and the The author should be aware of (and indicate) the first sentence should offer a concise introduction to intended audience for the text. the text. For example, potential participants in studies OR the general public. 4Content The text should provide answers to the essential Lay Summary guidelines reviewed by questions: Who, What, Where, When, Why, How? Patients Participate For example, the reader should easily be able to find answers to questions such as ‘By whom was the • Tips for Writing a Lay Summary research funded, and why?’ (University of Manchester, Faculty of Engineering and Physical Sciences) Relevance, application and benefits Aims and objectives should be clearly signalled. For • The Lay Summary in medical research example, the ‘point’ – the impact – of the work should proposals – is it becoming more be clearly understood. important? (Smith and Ashmore, 2010) everyday examples • Asthma UK Foundation grant round: Give concrete everyday examples wherever possible. Guidance Notes for lay reviewers. (Asthma UK) Timescales • Writing a lay abstract (Asthma UK) Timescales, if relevant, should be clearly defined. • Frequently Asked Questions (FAQs) about Risks Asthma UK’s annual grant round. If it is relevant to the activity you are summarising, (Asthma UK) make sure that any risks attached to the activity are clearly identified and described. • Trials database preforms (CancerHelp UK) Person-centred language • Editorial policy (CancerHelp UK) The language used should be person-centred, rather than focusing on circumstance, illness or disability. For • Trials database editorial policy example: ‘people with a disability/illness’ is preferable to ‘the (CancerHelp UK) disabled/invalids’; a person ‘has cerebral palsy’ rather than ‘is a victim of cerebral palsy’.• Writers’ guidelines (CancerHelp UK) • A brief guide to writing for a lay audience. Appropriate tone (Cancer Research UK) The text should not be written to entertain. • General guidelines for the Muscular Dystrophy Campaign website (Muscular Dystrophy Campaign) • How to write a clinical trial summary (Muscular Dystrophy Campaign) • Muscular Dystrophy Campaign Lay Grant Application Form – guidance Notes (Muscular Dystrophy Campaign). • Project Grant Plain English Summary (The Stroke Association) 5In the Natural Ground report, the AMRC provides Roles and the following key learning points for organisations that wish to promote and support the writing of lay Responsibilities 17 summaries: Institutions are increasingly being encouraged to fulfil public engagement responsibilities, for example • The method used to develop plain English versions through the Research Councils UK Concordat for of research will depend on the organisation, 14 Engaging the Public with Research , which offers its resources and the perceived need for the the principle that research organisations need to information. have a strategic commitment to public engagement. Institutions have a role in encouraging researchers • Information provided to lay members should be to communicate with the public and to make their relevant to their needs and the task they are being research accessible. They may be able to provide asked to do. training to researchers and those in training, e.g. post-graduates, through courses and events. They • Different groups of lay people require information can raise awareness of and offer resources on writing in different formats or even different information lay summaries. – it is vital that participants are in involved in the process of deciding what information is relevant to Funders (including public funding bodies and them and how it should be presented. charities) may require the production of a lay summary as part of their grant conditions. Funders • Researchers need to be assured that providing a should provide clear guidance on the aims of the lay truly lay abstract will not mean their application is summary and describe how it will be used. They marked down by scientific peer reviewers as being must explain to researchers why this additional unscientific. information is needed, and stress the importance of 15 doing it well . They may need to design structures • Providing more lay-friendly information was a and templates to assist with the production of lay culture-change for researchers. They require summaries. They may need to ask researchers for guidance on what information should be provided further information or provide training on writing and clarity on what will happen if they do not better lay summaries. comply. If scientific and lay members are commenting on different aspects of an application during review, the funding body must ensure that this is clear to all panel members. The chair of the panel should be briefed 16 on how to manage any confusion. Researchers have a duty to make their research accessible to a wide audience. They may need to provide lay summaries to fulfil grant conditions or as part of an application for funding. Researchers need to perceive the writing of lay summaries as part of their wider remit to communicate with the public. They must seek to acquire the skills needed, and incorporate the teaching of those skills to junior members of their teams. Service providers have a responsibility for the dissemination of research findings, including dissemination to the general public. Research is accessed in different ways and through different portals. There is a role for publishers of research and the funders of research to consider how the research can be presented using different forms, formats and channels to communicate it most effectively to different audiences. Different levels of detail and routes for navigating the information should be investigated and tested. 14 Research Councils UK, Concordat for Engaging the Public with Research. Retrieved Mar 20 2012 from: http://www.rcuk.ac.uk/per/Pages/Concordat.aspx 15 AMRC, Natural Ground, p. 9. 16 Ibid 17 AMRC, Natural Ground, p. 11. 6 6Examples 18 The Patients Participate Case Study report described some narratives gathered to answer the question: Who is currently producing easy to understand information relating to biomedical research for the public and how do they do it? The examples in the case studies are illustrative of some of the methods organisations currently employ and some of the challenges in doing it well. They describe useful methodologies and approaches for others who are starting out, those trying to increase the volume or improve the quality of their lay communications, or seeking to include patients in their activities in meaningful ways. Two of the examples are presented here. From: Patients Participate Case studies 2011.http://blogs.ukoln.ac.uk/patientsparticipate/files/2011/10/ Case-study-report-Final.pdf CancerHelp UK PloS Medicine Cancer Research UK is a large charity with over three PLoS Medicine is a peer-reviewed, international, open- thousand staff and a research budget of £300 million. access, web-based journal containing original research CancerHelp UK is their flagship information website, and analysis relevant to human health. The journal forming part of a communication strategy which is published by the Public Library of Science (PLoS), employs new media such as Twitter and Facebook. which was founded by scientists in order to provide As part of their commitment to providing easy-to- unrestricted access to scientific research outputs. PLoS understand information about cancer and cancer care, journals also have as one of their core principles: for the past eleven years CancerHelp UK has employed a team to provide plain English summaries of ongoing ‘developing tools and materials to engage the interest clinical trials. and imagination of the public and helping non-scientists to understand and enjoy scientific discoveries and the On the site they aim to list all cancer trials and studies scientific process’. recruiting UK participants – these trials and the volunteers that take part in them are vital to developing To this end some PLoS journals provide lay summaries new treatments and methods of cancer detection. alongside research articles. PLoS Medicine includes Having clear, easy to understand information about a one of these summaries embedded within every trial is crucial for patients considering participating in research article they publish. Following article it. The writing team have years of clinical knowledge submission, summaries are written by the journal’s and experience, and this is considered critical in being editors and are pitched at a level that the general able to translate technical information relating to the public with no medical or biomedical background can trials in a way that patients will find useful. Having dealt understand. The aim of these summaries is to try to with patient’s questions in a clinical setting the team make all published articles accessible to anyone who also understand the types of practical issues that will wants to try to understand them, which is central to concern patients. the PLoS ethos. A set of internal style guides help to ensure consistency in structure and language. These CancerHelp produce a plain English summary for each consist of a set of broad headings (background, individual trial, which includes information from the rationale for undertaking the research, research findings trial protocol and the patient information sheet. The and the importance of the results in a wider context) patient information sheet is intended to provide all the of the information that needs to be included and a list necessary information relevant to patients and the of Dos and Don’ts. Editors also include links to further public so they can make an informed decision about information that might be useful to the reader. The participating in a trial. summary and links are included in the copy-edited version of the article, often with a set of questions for The team have developed their own guidelines, editorial clarification which is then sent back to authors for sign- policies and style guides (all available on their website), off. This gives researchers the opportunity to fact-check founded on patient feedback from evaluation and summaries, comment on the information, and add links review of the information. To ensure quality of their to other websites and resources. summaries, the CancerHelp team have a rigorous internal editorial process to ensure that the information PLoS Medicine is a highly selective journal, publishing a provided will answer the patients’ questions, is pitched small number of research articles, allowing their editors at the appropriate level and avoids jargon of any kind. to feasibly write a summary for every article. Writing The trial team are asked for final approval on the them takes time and skill. summary, a process that is often iterative and it can take some time to come to a consensus on summary http://www.plosmedicine.org/ content, style and language. http://cancerhelp.cancerresearchuk.org/utilities/about- cancerhelp-uk/cancerhelp-uk-policies/ http://cancerhelp.cancerresearchuk.org/trials/ 721 science , others consider writing their research in Training and support accessible language to be a time-consuming challenge. Moreover, writing lay summaries has to fit alongside examples other demands and workloads, often juggled with deadlines for grant submissions, when other parts Universities are offering services to help researchers of the grant are considered more important. The lay and students acquire skills in lay summary writing. summary can become a chore, and feel like a difficult This can take the form of courses or training activities, and pointless exercise, particularly if researchers do not written guidance, and review and discussion. feel that they are equipped with the required skills. The University of Manchester runs a training Researchers may need to be persuaded of programme for graduates through its eProg the benefits. Development Programme. Half day interactive For researchers to commit the time and effort to workshops are held with small group discussions in learn the skills and write good summaries, they need which examples of lay summaries are deconstructed to believe that public engagement is one possible including samples of the participants’ draft summaries, approach to improving the quality, relevance and with feedback provided. The Faculty of Engineering impact of their work. Not everyone will buy in to this and Physical Sciences also publishes two resources for argument, and the anticipated benefits and processes Graduates and Researchers: a tip sheet and a summary may need to be spelt out. Until researchers see the of Guidance from research funders. benefits for themselves, writing lay summaries can be perceived as a burden. Positive examples from other The University of Illinois offers a web page describing fields may be a useful tool to demonstrate benefits. lay summaries and their different uses. Their Research Development Services offer a review service for research summaries. Defining the audience. One of the key pieces of advice given to lay summary The University of Bath hosted a conference entitled writers is for the summary to be compelling and Developing Writing in STEM disciplines in September understandable by the audience it is written for. 2011, as part of a South West HE project on developing However the audience is often either poorly defined or writing skills, to identify good practice in developing described in ways that may not be helpful to the writer. 22 writing skills, attitudes, identities and values. Smith and Ashmore illustrate with examples that guidance from funders can be contradictory or unclear. Read-aloud and review by non-specialist Current issues and as methods of checking lay summaries. Two methods are commonly suggested to lay summary challenges writers to check the appropriateness of lay summaries. These are to read the text aloud to yourself, and to The production and use of lay summaries is an evolving ask someone else who is not the domain expert, and practice, and cultural and practical challenges remain, preferably from the intended audience, to read and both in producing well-written lay summaries that are comment on it. There are reports in the literature that accessible to the intended audience and in providing reading aloud helps to detect errors, although there is services that reach the public and are useful. a lack of information on the specific task of using this method for lay summary checking. Studies do suggest Writing lay summaries is inherently difficult that finding errors in in texts written by others is easier or not enjoyable. 22 than finding errors in one’s own text. However some RELU, Example Data Management Plans, URL: http://relu.data-archive. Most researchers find writing a lay summary a difficult ac.uk/DMPexample.asp questions remain about the specific skills needed and 19 task and may require different skills to other writing 23 how they can be taught. Error detection through reading See for example RAPID Climate Change programme Data Management tasks that they perform. In the Natural Ground report, Plan, URL: http://www.noc.soton.ac.uk/rapid/sci/documents/rapid_data_ is quite complex and does depend on who is doing the the AMRC reported that “researchers often continued plan.pdf and Micro to Macro µ2M Data Management Plan, URL: http:// reading. Further research into both these methods for to provide summaries that were impenetrable to www.bgs.ac.uk/micromacro/docusearch.cfm?dtype=d checking lay summaries would be useful, for example to patients and the public”; the information provided was 24 suggest some effective guidelines for proof-reading of Guidance Notes for Completing a Data Management Plan, URL: http:// 20 insufficiently clear, despite requests to simplify it . www.dmtpsych.york.ac.uk/s.php?p=12 lay summaries. CancerHelp UK found that clinical researchers often did 25 not have the necessary skills, and they now employ a ICPSR, Data Management Plan Resources and Examples, URL: http:// Providing support for lay summary writing www.icpsr.umich.edu/icpsrweb/ICPSR/dmp/resources.jsp team of people with the defined skills and training for writing for a lay audience. (templates/forms) 26 UCSD, Example Data Management Plans, URL: http://rci.ucsd.edu/ The lay summary may need to be presented in a style dmp/examples.html Some researchers enjoy writing for the public and and structure that is different to that normally used in 27 Yale University, Data Management Plan Examples, URL http://odai. embrace the value of helping the public understand applications for funding or when writing for journals and research.yale.edu/data-management-plan-examples 18 Patients Participate Case studies 2011. Retrieved Mar 20 2012 from: http://blogs.ukoln.ac.uk/patientsparticipate/files/2011/10/Case-study-report-Final.pdf 19 Smith and Ashmore, The Lay Summary in medical research proposals. 20 AMRC, Natural ground, p. 11 21 Stephen Curry, Run that by me again? On the joys of the lay summary. LabLit.com, 2008. Retrieved March 20, 2012 from: http://www.lablit.com/article/435 8conferences. The Stroke Association reported that summaries as examples of good practice and to be survivors and carers would require different information able to demonstrate effectiveness. They may also 23 from that in the traditional application form . The lay be able to share examples with the wider community. summary must answer the questions that lay people Individuals may be able to use the impact of lay have about the research. For example patients trying summary use as evidence for the benefits of their to decide whether to join a clinical trial may put priority research, to justify further funding into the research on information about the number of hospital visits area. Furthermore, evidence of the use of lay required from participants. Templates and forms with summaries for the intended purposes would help make directed questions can help to make sure that the the case to researchers. questions of interest to the lay reader are answered. One example is provided by The Stroke Association, where the questions that guide the lay summary writing focus on the involvement of stroke survivors. Further Information and Conflicting guidelines and requirements. Bibliography One issue with forms for submission of lay summaries is that sometimes conflicting guidelines may be Association of Medical Research Charities. Natural Ground: encountered. For example the requirement to write Paths to patient and public involvement for medical research in paragraphs is in tension with the need to fit text charities. AMRC, October 2009. Retrieved March 20, 2012 within the confined space of a form. Similarly, adding from: http://www.amrc.org.uk/our-members_natural-ground:- medical terms alongside plain English words for patient-and-public-involvement-project_ppi:-natural-ground conditions will use up words within a tight word limit count. Asthma UK. Involve people with asthma in your research. Retrieved Mar 20 2011 from: http://www.asthma.org.uk/ More research is needed into what makes for_researchers/lay_involvement/involve_people_with.html a good lay summary. Asthma UK. Writing a lay abstract.Retrieved March 20, Although guidelines are being developed and some 2012, from: http://www.asthma.org.uk/for_researchers/ commonality can be identified between the guidelines, lay_involvement/writing_a_lay_abstra.html it is not clear if the practice and advice is grounded in evidence. Next to no research is available on what makes a good summary and there is a scarcity of Asthma UK. Frequently Asked Questions (FAQs) about evidence of lay summaries and guidelines being tested Asthma UK’s annual grant round. personal communication 24 for effectiveness. Smith and Ashmore note that funders differ in what they expect and there seems to Asthma UK. Lay Abstract. personal communication be no consensus in how to write a lay summary. CancerHelp UK. Trials database editorial policy. Retrieved Services, models of access and use of lay March 20, 2012, from: http://cancerhelp.cancerresearchuk. org/utilities/about-cancerhelp-uk/cancerhelp-uk-policies/ summaries. 25 trials-database-editorial-policy Curry explains his doubts as to whether the public ever access lay summaries. PLoS Medicine reports CancerHelp UK. Trials database preforms. Retrieved March that there is a low level of interaction by the public 20, 2012, from: http://cancerhelp.cancerresearchuk.org/ using tools for rating, notes, links and threaded utilities/about-cancerhelp-uk/cancerhelp-uk-policies/trials- discussions provided on their site, and they do not yet database-pro-forma 26 have a good understanding for the lack of interaction . If lay summaries are going to be a means of bringing CancerHelp UK. Editorial policy. Retrieved March 20, 2012, research to the public, helping to foster relationships from: http://cancerhelp.cancerresearchuk.org/utilities/ between researchers, those that fund the research and about-cancerhelp-uk/cancerhelp-uk-policies/editorial-policy/ those that are impacted by the research, they need to be easy to find, easy to access, easy to navigate, and CancerHelp UK. Writer’s guidelines. Retrieved March 20, easy to interact with. This may require different service 2012, from: http://cancerhelp.cancerresearchuk.org/utilities/ models, delivery formats and collaboration and co- about-cancerhelp-uk/cancerhelp-uk-policies/editorial-policy/ ordination between different organisations that are part writers-guidelines of the research Curry, S. (2008) Run that by me again? On the joys of the lay summary. Retrieved March 20, 2012, from: http://www.lablit. Gathering evidence of impact. com/article/435 Organisations may need to make the case to justify allocating resource and effort to the writing of lay INVOLVE. (2007) The impact of public involvement on summaries. Organisations and individuals need research A discussion paper from the INVOLVE Evidence, to collect information about the impact of their lay 22 Smith and Ashmore, The Lay Summary in medical research proposals. 23 AMRC, Natural Ground, p. 31. 24 Smith and Ashmore, The Lay Summary in medical research proposals. 25 Curry, Run that by me again? 26 Patients Participate Case Studies. 9users? Retrieved March 20, 2012, from: http://www. Knowledge and Learning working group. Retrieved March twocanassociates.co.uk/routemap/why-involve-service- 20, 2012, from: http://www.conres.co.uk/pdfs/EKLdiscus- users.php sionpaperfinal170707.pdf Lindsay, K., Keen, A. (2010) Debate Should the general TwoCan Associates and AMRC. Why Involve Service Users public be involved in academic research? JISC Inform, issue in Research: A route map. Service user involvement in 27, Spring 2010. Retrieved March 20, 2012 from: http:// research projects. Retrieved March 20, 2012, from: http:// www.jisc.ac.uk/publications/jiscinform/2010/inform27. www.twocanassociates.co.uk/routemap/user-involvement- aspxdebate in-research-projects.php Muscular Dystrophy Campaign. General guidelines for University of Manchester, Faculty of Engineering and the Muscular Dystrophy Campaign website personal Physical Sciences, Graduate and Researcher Development. communication Tips for Writing A Lay Summary. Retrieved March 20, 2012, from: http://www.graduateeducation.eps.manchester.ac.uk/ Muscular Dystrophy Campaign. How to write up a clinical graddev/events/laysummarycomp09/Lay%20Summary%20 trial summary personal communication Writing%20Tips%2009.pdf Muscular Dystrophy Campaign. Lay Grant Application Form University of Manchester, Faculty of Engineering and – guidance Notes personal communication. 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University of Bath, September 2011. The Stroke Association. Project Grant Plain English Retrieved March 20, 2012, from: http://www.bath.ac.uk/ Summary. personal communication learningandteaching/eventsworkshops/HESTEMConferen- ce120911Internalv3.pdf TwoCan Associates and AMRC. Why Involve Service Users in Research: A route map. Why involve service Northern Territories Literacy Council. Write For Your Reader users? Retrieved March 20, 2012, from: http://www. A Plain Language Handbook. Retrieved March 20, 2012, twocanassociates.co.uk/routemap/why-involve-service- from: http://www.nwt.literacy.ca/resources/plainlang/ users.php writread/cover.htm TwoCan Associates and AMRC. Why Involve Service Users Northern Territories Literacy Council. Plain Language Audit in Research: A route map. Service user involvement in Tool. Retrieved March 20, 2012, from: http://www.nwt. research projects. Retrieved March 20, 2012, from: http:// literacy.ca/resources/plainlang/auditool/cover.htm www.twocanassociates.co.uk/routemap/user-involvement- in-research-projects.php Smith, M and Ashmore, C. (2010) The Lay Summary in medical research proposals – is it becoming more important? University of Illinois Research Development Services. Poster presentation at Making an Impact - Annual Writing a Lay Summary. Retrieved March 20, 2012, from: Conference of the Association of Research Managers and http://tigger.uic.edu/depts/ovcr/research/funding/writing_ Administrators, Manchester, June 2010. Retrieved March 20, summaries.shtml 2012 from: http://www.keele.ac.uk/media/keeleuniversity/ri/ istm/documents/Lay_summary_poster_final.pdf University of Manchester, Faculty of Engineering and Physical Sciences, Graduate and Researcher Development. Oswald, N. Make your Manuscripts more readable in 5 Tips for Writing A Lay Summary. Retrieved March 20, 2012, minutes per Day. Retrieved March 20, 2012, from: from: http://www.graduateeducation.eps.manchester.ac.uk/ http://bitesizebio.com/articles/make-your-manuscripts- graddev/events/laysummarycomp09/Lay%20Summary%20 more-readable-in-5-minutes/ Writing%20Tips%2009.pdf Research Councils UK. Concordat for Engaging the Public University of Manchester, Faculty of Engineering and with Research. Retrieved March 20, 2012, from: http://www. Physical Sciences, Graduate and Researcher Development. rcuk.ac.uk/per/Pages/Concordat.aspx Funding bodies and lay summaries. Retrieved March 20, 2012, from: http://www.graduateeducation.eps.manchester. The Stroke Association. Project Grant Plain English ac.uk/graddev/events/laysummarycomp09/Funding%20 Summary. personal communication Bodies%20and%20Lay%20Summaries%2009.pdf TwoCan Associates and AMRC. Why Involve Service Users Woolf, L. (2011) A brief guide to writing for a lay audience. in Research: A route map. Why involve service Cancer Research UK. personal communication. 10Acknowledgements The input of Emma Tonkin, UKOLN, to the review and synthesis of the guidelines for writing lay summaries is gratefully acknowledged. Quotes and guidelines are re-used with permission from the AMRC Natural Ground report (2009). This report contained several useful examples of involvement of lay people and case studies from charities’ experiences with lay summaries and lay review. The examples in the Examples section were re-used with permission from the Patients Participate case study report. This resource was produced by the Patients Participate Project which was funded by the JISC eContent Programme 2011 http://www.jisc.ac.uk/ whatwedo/programmes/digitisation/econtent11.aspx Thank you to reviewers for helpful comments. Please cite as: Duke, M. (2012). ‘How to Write a Lay Summary’. DCC How-to Guides. Edinburgh: Digital Curation Centre. Available online: http://www.dcc.ac.uk/resources/ how-guides. 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