Developments in medical technologies and procedures are associated with a rapid rise in the number of people surviving in prolonged disorders of consciousness (e.g. 'vegetative' and 'minimally conscious' states). However there has been relatively little research, and few resources, to help people to deal with the issues that arise when they have a loved one in such a condition. Our original research demonstrated the need for high-quality internet resources to support these families and to serve as a resource for relevant professionals. The proposed project builds on our original study of 30 people with a relative in a disordered state of consciousness who were interviewed about their experience of the care and treatment of their loved one (e.g. a partner, parent, offspring or sibling). Although the focus of this original research was 'decision making' these interviews (which lasted an average of 4-5 hours) form a rich data-base in which families talk about a wide variety of issues from the shock of the original injury and the process through which a diagnosis was reached over time, through to the long term issues facing families (emotional and practical) and the complex choices in which they may be involved (e.g. where their loved one should be cared for, how to manage their affairs, what specific medical treatments should be pursued or forgone). The original interview study was conducted using qualitative methods based on rigorous social science research methodology and all interviews were conducted by one or other of the senior researchers submitting this bid. These data will be combined with interviews with an additional 8 interviews (videoed where possible) and the entire corpus will be re-analysed for the purpose of writing 20-25 summaries on the issues that are most important to these families in order to produce a resource to be published on 'HealthTalkOnline' http://www.healthtalkonline.org/) - a widely used site (5 million hits /100,000 unique visitors per month) certified under the Department of Health's Information Standard scheme and winner of severalawards for the innovative form, accuracy and quality of the information it provides (e.g. British Medical Association Patient Information Awards, Health Care IT Effectiveness Awards and Social Innovation awards - see www.healthtalkonline.org/Overview/Awards_healthtalkonline). The development of the new HTO section of the website about disorders of consciousness will follow the good practice model already established through over 70 HTO projects (see attached list of HTO modules). The topic summaries will be drafted by the senior researchers who collected the original data under the guidance of Sue Ziebland, and drafts will be discussed and reviewed with her, and by a member of an expert advisory panel. The panel will include family members/carers, social scientists and health and social care professionals. The summaries of key issues will be illustrated with clips from the interviews in video, audio or text format and the researcher will identify, in consultation with the advisory panel, a list of respected national and local organisations and websites that provide other kinds of information and support, for inclusion on the site. Prior to publication of the material on the HTO website by project partners DIPEx we will coordinate two focus groups to ensure that the new site reflects the experiences of families and that we have correctly identified the issues that are important to a broad range of people. This piloting will include participants being invited to explore the draft website and complete a brief questionnaire. After publication the site will be promoted and developed for use by a wide variety of users/stakeholders.

Seen as an almost fatal disease half a century ago, cancer has become a treatable disease for many, with a growing proportion of cancer patients living for more than five years after a diagnosis. Recent estimates suggest that there are now 2 million people living past a diagnosis of cancer in UK and over half of these have had breast, colorectal or prostate cancer. As the five-year survival rates for all cancers combined has reached 50%, the long-term effects of cancer and its treatments, both physical and psychological, are becoming more relevant. While many people surviving at least 5 years from diagnosis report few or no problems, 20-30% report physical problems, poorer quality of life, psychological distress, sexual problems, problems with social relationships and financial concerns. Although there is an enormous range of resources available to people with cancer, most are aimed at supporting people through the diagnosis and active treatment phases. There has been relatively little research, and few resources, to help survivors to deal with life beyond the active treatment phase. Our research with cancer survivors demonstrates the need for internet resources to support the growing number of people living with cancer long-term. The proposed project will follow on from a Cancer Research UK funded study about the use of primary care services and unmet needs of long-term cancer survivors. As part of that research, 40 people who had survived at least 5 years from diagnosis of breast, colorectal or prostate cancer were interviewed about what it is like to live beyond cancer. The interview study was conducted using qualitative methods developed by a group of social scientists in the Health experiences research group Oxford that have been developed and refined over 10 years and based on rigorous social science research methodology. These data will be combined with interview recordings from long-term survivors of other types of cancer who participated in previous HTO studies, and re-analysed for the purpose of writing 20-25 summaries for HTO on the issues that are most important to cancer survivors. The topic summaries will be illustrated with clips from the interviews in video, audio or text format. The topic summaries will be drafted by the researcher, checked by another researcher who will familiarise themselves with all the data, and by an appropriately qualified member of an expert advisory panel. The panel will include cancer survivors, social scientists and health and social care professionals. The researcher will identify, in consultation with the advisory panel, a list of respected national and local organisations and websites that provide other kinds of information and support, for inclusion on the site. Before our project partners, DIPEx, publish the material on the HTO website we offer a couple of pilot focus groups to ensure that the new site reflects the experiences of cancer survivors and that we have correctly identified the issues that are important to a broader range of cancer survivors than those included in the original interview sample. Audio tape recorded focus group interviews would be conducted with long-term cancer survivors and used to identify unmet information and support needs. Participants would then be invited to explore the 'draft' website and complete a brief questionnaire which would cover whether the site addressed their unmet needs, whether the issues that they think are important were covered, whether perspectives akin to their own had been covered in the topic summaries, if they had learnt anything new and whether they would recommend the site to others. The new section of HTO on living beyond cancer will be intended primarily as a resource for other people who are living beyond cancer, their family and friends, and will also be used to educate health and social care professionals.

Our proposal aims to use secondary analysis to provide evidence for user-centred quality improvement in health and social care. It builds on two existing initiatives: 1. An archive of 3000 qualitative video and audio interviews on over 80 topics with users about their health and illness experiences held by the Health Experiences Research Group (HERG), University of Oxford (and disseminated publicly on www.healthtalkonline.org run by the DIPEx Charity) 2. Experience-Based Co-Design (EBCD), a participatory action research approach which actively involves service users in service design and has been implemented in over 60 care services in six different countries since being piloted in 2006. Past evaluations have shown it to be effective in achieving quality improvement and cultural change. Both initiatives include video-recorded in-depth interviews with people talking about their experiences. HERG interviews are nationally collected and wide-ranging, whereas EBCD interviews are collected locally with a more specific focus on 'touchpoints' - key interactions between users and services where quality improvements can be made - in each care setting. In EBCD analysis of these touchpoints is used to create a 'trigger' film which staff and users watch together to start a discussion about improving care locally, before setting up co-design working groups to plan and implement changes together. These two initiatives have already collaborated on a recent study for the National Institute for Health Research (NIHR) which demonstrated EBCD in two care pathways based on secondary analysis of HERG interviews rather than new local interviews worked just as well, saving time and cost. This provides a strong evidence base to propose further secondary analysis to support care organisations seeking to apply experience-based quality improvement in an affordable and timely way across more conditions. We will reanalyse ten of our existing interview collections. In each case the primary research question for the secondary analysis will be: What touchpoints do users identify in their experiences of care where quality could be improved? The HERG collections are generally focused around a particular condition or health topic. However, there is much material in the collections that could inform service settings and integration of care across sectors. Alongside the analysis for touchpoints in each condition, we will also ask: What are the touchpoints for a) outpatient care and b) interactions between health and social care across a range of different conditions which could be used to redesign services? The secondary analyses will involve a researcher going back to the full transcript collection to identify touchpoints. On healthtalkonline, we also have a set of lay summaries identifying key topics of importance to interview participants in each condition (though not specifically analysed for touchpoints). A key further empirical question to ask is therefore: What touchpoints would emerge from a re-analysis of the website summaries, compared to re-analysis of the full transcripts? Can further time savings be made in identifying touchpoints by this method or is too much lost in the process? We will also involve service users in the secondary analysis process, supporting them in analysing both selected transcripts and selected website summaries, and discussing with them similarities and differences in the touchpoints they identify compared to the social science researcher. We will disseminate findings from the secondary analysis in the form of a series of trigger films made in collaboration with the DIPEx Charity, using our existing video recordings to illistrate the touchpoints we identify, and make these available through both www.healthtalkonline.org and the Point of Care Foundation online EBCD toolkit. With the close and active support of NHS England our findings will have a clear route to impact on policy and practice