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• W2080700312 abstract "Advances in health care take place with time and with due consideration. This careful approach is entirely justified given that almost all medical progress relies, at some stage, on the evidence that is generated when volunteers participate in clinical research projects. However, the desire to bring patient benefits and to alleviate suffering combined with increasing costs means that research projects are under constant pressure to produce results as quickly as possible. Many projects suffer delays because of problems associated with recruitment. In addition, the need to ensure that studies complete on time has led to the globalisation of many large studies which now can only progress on a multi-centre international basis. Yet against this background the message from those who have taken part in clinical research continues, for the most part, to be a very positive one. With the prevalence of diabetes on the increase it could be imagined that recruitment for research studies would be a diminishing problem, but this is clearly not the case.1 This article describes a new resource for those involved in clinical research that is designed to encourage people to find out more about their condition and to educate them about the importance of research in advancing health care. The idea was to increase the number of people volunteering for research programmes by providing information from fellow patients. By involving patients, the project made them the centre of this innovative initiative. The use of video provides a way to capture a very personal perspective that could not easily be presented by any other medium. Initial interviews with patients who had taken part in research projects revealed a very strong message that participating in a research project can provide personal benefit and is a very positive experience. We wanted to find a way in which this message could be carried to a wider audience. In 2005/2006, 79% of households in the UK had a DVD player and 57% had access to the internet—these media therefore seemed to provide the ideal format.2 A focus group of patients and carers was set up to establish a preferred style and format for the video material. What are the benefits and drawbacks? Is it time consuming? What is involved in research? The interviewer had a free rein to ask additional questions, seek clarification and to pursue interesting lines of questioning. The interviewees were informed that they did not have to answer any question should they prefer not to do so. Each interview lasted approximately 30–40 minutes and the interviewees signed a model release form to allow their image to be used for public broadcast. None of the answers was scripted and all the responses are personal views. In addition, a number of health care professionals were also interviewed. They were asked about their role in diabetes research and were questioned about specific aspects of diabetes and diabetes research. Overall, more than 30 hours of video material were captured. The highlights were selected by the authors and edited to produce a prototype DVD. The prototype was then subjected to a rigorous review process. More than 100 patients, carers, health care professionals and researchers gave their feedback. These comments were collated and categorised and finally used to implement changes for the second edition of the DVD. The main comments were: to include a voice-over for the questions, to include subtitles so that the DVD could be played with no volume, and the use of more general views (clinic shots, patient measurements such as blood pressure and questionnaires). Feedback suggested that the ideal duration would be around 20 minutes. This meant that there was a wealth of additional video material that could be used to populate the sister website (www.diabetesresearchnetworking.org). In addition, the website also contains text written by experts from across the field of diabetes research. This allows individuals to browse different topics and to access information about specific areas of diabetes and diabetes research. The website also offers the advantage of ongoing development with new video and written material, podcasts and graphics as well as the opportunity to become interactive with chat rooms and discussion forums. The materials can be used in variety of ways. The DVD is available to individual patients and to health care professionals for personal viewing by contacting the producers (details below). In addition, it can be played in clinic waiting rooms and can be shown at meetings. The back cover has a space for each clinic or research centre to place site-specific contact details. The website can be accessed by anyone with a connection to the internet. The content is wide ranging and can be used in a wide variety of contexts from drug trials to lifestyle interventions and non-experimental studies. A major observational study in South London (the SOUL-D study) has been the first to use the DVD in a systematic way. The South London Diabetes study is a prospective cohort study of people with newly diagnosed type 2 diabetes. The project is one of three studies constituting a research programme titled ‘non-pharmacological approaches to improving diabetes outcomes’, funded by the National Institute for Health Research (NIHR) and awarded to Professor Stephanie Amiel. The main aim of the research is determine which biopsychosocial factors are associated with diabetes outcomes, glycaemic control and cardiovascular risk factors, at two years. The recruitment target is approximately 2000 people with new onset type 2 diabetes and the setting is GP practices in the South London boroughs of Lambeth, Southwark, Lewisham and Bromley. Patients who consent to participate in the research undergo a physical assessment—similar to a usual diabetes monitoring visit—and a brief interview, and are given a questionnaire to fill in. Following this they are invited to have fasting bloods taken. Participants are seen three times in total: at baseline, and at 12 and 24 months follow up. Participants do not directly benefit from the research. However, they do receive copies of their blood results and these are also forwarded to their GP along with results of their physical assessment, so in this way participants are receiving additional monitoring. The DVD has been distributed via the coordinating centre at King's College Hospital and copies have been sent to approximately half the GP centres recruiting for the study. It is anticipated that one of the advantages of using the DVD is that it will answer many of the questions that patients have about participating in research. By using the DVD in this way participants can view the material at their own convenience and can choose to view topics of greatest interest to them personally. The material highlights the altruistic motivation for many research participants and emphasises that while they may not personally benefit from the research they will be helping future generations of patients. At this stage it is not possible to say whether this has helped recruitment to the study. However, anecdotally, patients who have viewed the DVD report that they feel reassured about participating in SOUL-D. It is difficult to measure the impact of these resources because they have been made so widely available. However, so far almost 2500 DVDs have been distributed to individuals, clinics and research groups. Anecdotal feedback has been extremely positive, comments from viewers include the following. ‘Thank you for giving me my first clear and concise explanation of type 2 diabetes in over the 20 years since I was first diagnosed! A gem indeed!’ ‘I have found your highly interesting website today and have been watching two videos.’ In the first eight months since launch the website had almost 3000 unique users and almost 130 000 hits primarily from the UK, the US and Europe. For the last 60 years the bedrock of protecting those who take part in clinical research has been fully informed consent. This new information resource allows those wanting to find out more about research in diabetes to learn from fellow patients as well as health care professionals using a modern media, easily accessible approach. Taking part in research can be a very positive experience helping patients to better understand their condition and how to manage their diabetes. This practical resource is designed to improve understanding, increase interest and encourage involvement in clinical research. The website can be accessed at www.diabetesresearchnetworking.org. Copies of the DVD can be obtained from The Diabetes Research Network, Oxford Centre for Diabetes, Endocrinology and Metabolism, Churchill Hospital, Old Road, Headington, Oxford OX3 7LJ, UK; telephone + 44 (0)1865 857508. The authors would like to thank the patients and health care professionals who took part in the interviews and the investigators who nominated their patients: Professor Stephanie Amiel (London), Mrs Shona Briarley (Dundee), Professor Melanie Davies (Leicester), Professor David Dunger (Cambridge), Dr Steven Greene (Dundee), Professor David Matthews (Oxford), Mrs Oonagh McGlone (Belfast), Dr Ann Millward (Plymouth), Professor David Owens (Cardiff). This work was funded by the NIHR Biomedical Research Centre Programme and through the UK Diabetes Research Network. Joose TV carried out the filming and did the interviews. Webfire built the website." @default.
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• W2080700312 title "Clinical research in diabetes: a practical resource to assist with participant understanding and recruitment" @default.
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