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JISC Patients Participate Case Studies
Contents
ACKNOWLEDGMENTS 2
BACKGROUND 3
CASE STUDY 1: CANCERHELP UK 4
CASE STUDY 2: MUSCULAR DYSTROPHY CAMPAIGN 5
CASE STUDY 3: ASTHMA UK 7
CASE STUDY 4: PLOS MEDICINE 8
CASE STUDY 5: EUROSTEMCELL 9
CASE STUDY 6: CRUK WIKIPEDIA PROJECT 11
KEY FINDINGS 13
DEFINITIONS 14
Acknowledgments The project team would like to thank all those who, following the workshop, agreed to give further of their time and experiences for follow‐up interviews. We would like to thank Liz Woolf, Debbie Rodbart, Kristina Elvidge, Malayka Rahman, Helene Faure, Melissa Norton, Henry Scowcroft and Emma Kemp. This project has been funded through the JISC eContent programme 2011 on developing community content: http://www.jisc.ac.uk/whatwedo/programmes/digitisation/econtent11.aspx More information on the project is available at: http://www.bl.uk/science‐patients‐participate http://www.amrc.org.uk/our‐members_patients‐participate http://blogs.ukoln.ac.uk/patientsparticipate/about/
JISC Patients Participate Case Studies
BackgroundThis report presents Case Studies inspired by a workshop organised as part of the JISC‐funded Patients Participate project in June 2011. The project brought The British Library, UKOLN and the Association of Medical Research Charities together in partnership, for a feasibility study which aimed to explore the potential of developing a useful body of lay information for patients and those interested in biomedical and health research. The Patients Participate workshop brought together people from different communities ‐ patients, carers, researchers, charities, and technologists ‐ to explore the motivations and challenges to biomedical information access, comprehension, and use. In order to explore some of the issues raised in the workshop in more detail, we sought 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? To this end, we interviewed people within key information‐providing organisations to provide the case study narratives contained in this report. Patients and the general public are interested in understanding biomedical research for a number of reasons. Some members of the public have a general interest in science and would like to understand where public funding and their own donations are being invested. Patients tend to have more personal reasons such as to: build up knowledge of their own conditions; understand how new findings are relevant to them; and feel empowered to make informed decisions on treatments and whether to participate in clinical trials. With the ever expanding amount of online information available to patients, a number of questions arise such as how best to meet their biomedical information needs; what types of information do they find most useful?; what formats are easiest to access?; and how do they identify reliable and trustworthy sources? The types of organisations helping to make this type of information more accessible for patients include charities, universities, patient organisations, the NHS and scientific publishers. Many medical research charities involve patients in making funding decisions and therefore require scientists to include a lay description of their research in their funding applications. This shift towards patient and public involvement has developed in recent years. A broad range of approaches and varying relationships with patients and the public now exist. Many organisations also translate and communicate research outputs to the public, by producing plain English summaries of biomedical research findings. This requires significant time and effort and not all organisations are able to dedicate resources to such a service. These case studies are not intended to be a comprehensive analysis of all approaches undertaken to communicate biomedical research but they are illustrative of the methods some organisations employ and highlight the challenges in doing it well. We hope they will serve as examples of useful methodologies and approaches for others who are starting out and 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.
JISC Patients Participate Case Studies
CaseStudy1:CancerHelpUK(CRUK)A dedicated team of specialist nurse writers Cancer Research UK (CRUK), employing over 3,500 staff and with a research budget of over £300 million, is a large and diverse UK charity. The charity uses a range of channels to communicate and engage with patients and the public, including blogs, Facebook, Twitter and their own website. Through these platforms they have built strong connections with patients and the public and regularly recruit people from this network to review a range of activities and services. CancerHelp UK is their flagship patient information website, providing easy‐to‐understand information about cancer and cancer care. As part of this service, the CancerHelp UK team list all cancer trials and studies that recruit UK participants – these trials and the volunteers who take part in them are vital to developing new treatments and methods of cancer detection. Having clear, easy‐to‐understand information about a trial is crucial for patients considering enrolling in it. The CancerHelp UK team recognises that clinical researchers often find it challenging to write in lay terms. As a result, CancerHelp UK employs a dedicated team of specialist nurse writers, with defined skills and training in writing for lay audiences. The team has years of clinical knowledge and experience; this breadth of knowledge is considered critical in translating clinical information relating to the trials in a way that patients will find useful. Having dealt with patients’ questions in a clinical setting, the team also understands the types of practical issues that will concern patients. Once a new UK cancer trial has been identified, CancerHelp UK makes contact directly with the trial team to ask permission to list relevant information on their website. Obtaining agreement from the trial team is not usually a problem and CancerHelp UK works with a range of sponsors and funders, including a growing number of pharmaceutical companies.. Any trials that are funded by Cancer Research UK through the Clinical Trials Awards and Advisory Committee (CTAAC), are required to submit their protocols to CancerHelp UK as a condition of funding. CancerHelp UK produces a plain English summary for each trial, which includes information from the trial protocol and the patient information sheet. The patient information sheet is intended to provide all the necessary information relevant to patients and the public so they can make an informed decision about participating in a trial. However, as they are usually written by a member of the trial team who may not have specialist training or skills in writing for lay audiences, the patient information sheets are highly variable in quality, length and content, despite the availability of National Research Ethics Service (NRES) guidelines. The variability of patient information sheets is one of the main reasons that CancerHelp UK felt that it was necessary and valuable to provide plain English summaries relating to cancer trials on their website. When developing the CancerHelp UK website, extensive evaluation and review was undertaken to test whether the information it provided was easy to understand and answered patients’ questions. The team have since developed their own guidelines, editorial policies and style guides (all available on their website), founded on this patient feedback. In addition to the summaries themselves, general supporting information describing trials, trial phases and outcomes is provided for patients. CancerHelp UK still finds, however, that the skill of plain English writing is universally undervalued and the difficulty in getting it right is underestimated.
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established a research communications focus group, ‘Talk Research’. The group meets annually to consider whether the service continues to meet the needs of patients, and provides feedback on language, content and structure for the MDC website and publications. Members of this group are consulted on an on‐going basis e.g. when stories arise that are technically complex or particularly difficult to translate, however their feedback is mostly in the form of a retrospective review of the previous year’s news stories. They help MDC to come up with ideas for articles that appeal to a wide audience. The patients who participate in ‘Talk Research’ find the process very rewarding and often become involved in other aspects of the charity’s activities, including lay review of grant applications. Interestingly, MDC have found that the level of patient feedback and commenting outside of the formalised process (‘Talk Research’) is variable. The MDC website has a forum, which patients use primarily for socialising, rather than commenting on the information on the website. The forum has only been in place for a short time, so it will be interesting to see if use changes in the future. The MDC Facebook and Twitter pages are the place that most questions and comments are posted. These comments sometimes include questions about the effect that a particular piece of research will have on individual cases. MDC recognised, through consulting with patients, that there is a wide range of understanding and information requirements amongst patients and the general public. In order to address these different needs, information on their website is carefully structured. Short, simple overview paragraphs lead on to more detailed information, covering background contextual information, research findings, what this means for patients themselves and those with related conditions and finally, links to individual papers and further information are provided. In order to allow patients access to the research articles that underpin their news stories, MDC have become the first UK charity member of Patient Inform. This service allows them to place links on their web page to the participating journal, which provides access to the full journal article. The team often needs to respond rapidly to media coverage of new research published in subscription‐based journals, so access to research articles can be an issue for the MDC team, particularly when the research is not funded by MDC. MDC also produces lay summaries of clinical trials and being a small team, they struggle to cover the volume of new studies. They therefore decided to try to involve the researchers they fund in this process and asked PhD students and postdoctoral researchers to write lay summaries. The response was positive; fifteen early‐stage researchers saw this as a useful opportunity to gain experience in research communication. In order to support these researchers, MDC provided them with instructions, a template and examples of well written summaries, along with a glossary of common technical, scientific and medical terms to avoid. The team found the researchers involvement valuable and hope to expand this programme. While this approach has helped increase the number of trials MDC is able to cover, the bottle neck in the process now occurs at the point of editing summaries authored by the volunteer researchers. Setting up their communication research group (Talk Research) has proved beneficial to the charity in a number of ways: ‘The Talk Research group has been central in changing the way we communicate research information at the Muscular Dystrophy Campaign ,we now do it with our patients. It has also become an important entry route for patients to become further involved in the committees that make decisions on our research funding’
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European citizens make sense of stem cells, by providing a central multilingual resource of reliable, independent information and educational resources on stem cells and their impact on society. The project emerged from a scientific research project on stem cells funded through an EU Framework 6 grant. In this original project, the outreach component comprised a small element but it was so successful, that the project partners continued the outreach and communications work beyond the end of the project by funding maintenance of the web site through other projects they were involved with. Further funding for a large‐scale 4‐year project was obtained through an EU Framework 7 programme grant with a dedicated focus on engaging the public with stem cell science, using the website as a hub. The project continues to have the support of scientists; it brings together more than 90 European stem cell and regenerative medicine research labs from 12 contributing partner organisations. The experiences of the original project members formed the basis of the project strategy which was developed through formal testing with key audiences and feedback and enquiries received via the website. A team of six people developed the website, to provide information and educational tools, including short films, interviews, frequently asked questions, news pieces, fact sheets and teaching materials. They come from a range of backgrounds including scientific research, education, business, social science and professional science communication. This core team works closely with researchers, ethicists and clinicians from the 12 project partners and beyond, and considers the input of scientists essential to all aspects of the project, providing the team with expert knowledge about the latest scientific developments and the key issues in the field. Written materials for the website are developed with the researchers, who draft content for editing and adaptation for lay audiences before final review by a second researcher. This editorial process ensures that all content on the website has an expert stamp of approval. In general, feedback from researchers who write for the website or deliver engagement activities using EuroStemCel tools has been positive ‐ researchers report that it is a valuable and enjoyable experience. However, the demands on their time can be an issue for the team, as most researchers are time poor. The project team aimed to embed reflection and evaluation into the project from the outset and have a dedicated evaluation component, led by a social scientist with a background in public engagement with stem cell research. All resources and activities are piloted and then evaluated with audiences on an on‐going basis. A formal evaluation of the website through an online survey and a series of telephone interviews has just been completed. Scientists interviewed said they consider the information to be accurate, clear and reliable and educators using the teaching materials have indicated that they find them useful. The evaluation demonstrated a clear need for multilingual materials. From the outset, the project planned to translate the website and the educational materials into 10 languages, and the availability of accurate information and educational materials in local languages is likely to be one of the central positive outcomes of this project. The feedback gathered will be used to inform the future direction of the project and one of the key challenges facing the team will be to increase the visibility of these resources. Another important outcome has been feedback obtained from patients on how to better cater for their needs. The project had plans to develop new, dedicated materials for patients but had focussed in its first year on educational materials for other groups and had yet to actively involve patients in its work. The evaluation, in combination with ongoing consultation with patient groups, will now help guide plans for patient resources. Although patient involvement in the project has been limited to date, the project members are keen for this to increase and are planning to approach patient groups more actively for input and
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JISC Patients Participate Case Studies
KeyfindingsThe Patients Participate! workshop participants produced a set of recommendations on how best to enhance the communication of biomedical research. These were further explored through the case studies, demonstrating that where patients and the public have been involved in the research process, a number of positive outcomes have been observed. Patients themselves find the experience to be rewarding and charities benefit from their unique and valuable perspectives and their experiences. If patient involvement is to increase, biomedical research needs to be made more accessible alongside more extensive production of easy‐to‐understand, plain English information relating to biomedical research. This was expressed as the desire to have: ‘A lay summary with every UKPMC article’ In order to achieve this goal there is a clear need for further action, including the need to; 1. Share learning across organisations on the best approaches to producing lay information
relating to conditions, treatments and the latest scientific research findings, including mechanisms to;
Share guidelines, structures and standards for producing lay summaries
Develop methods to evaluate lay summaries
Involve patients, the public and researchers in the process
Improve visibility of existing lay summaries, and link to research articles
2. Explore of the best online mechanisms to deliver lay information relating to biomedical research to patients and the public. These could include use of existing platforms, websites and social media or purpose built technologies and tools. If quality of communications are to be maintained, on‐going feedback will be essential. It would be interesting to look at the reasons why existing on‐line feedback mechanisms are not being used.
3. Investigate the resource implications and sustainability. Biomedical research funders’ and publishers’ support in producing lay summaries of biomedical research will be key to achieving the goal.
JISC Patients Participate Case Studies
Definitions
Patient is used in this report to describe any individual who has an interest in a disease‐condition from a personal perspective; they may also be carers, parents, advocates, survivors etc. This is to differentiate them from the general public who may have an awareness of a given condition, but not personal experience of it and its impact. Definition from the AMRC Natural Ground Report. Patient and public Involvement ‘An active partnership between the public and researchers in the research process, rather than the use of people as the ‘subjects’ of research. Active involvement may take the form of consultation, collaboration or user control. Many people define public involvement in research as doing research ‘with’ or ‘by’ the public, rather than ‘to’, ‘about’ or ‘for’ the public.’ Definition from the National advisory group, INVOLVE.
