Understanding and Using Health Experiences Improving patient care

Improving patient experience is a global priority for health policy-makers and care providers. The need to look at healthcare delivery through the eyes of patients is widely accepted, but how should it be done? What use can be made of this information, and what evidence is there that such exercises lead to better care? Understanding and Using Health Experiences: Improving patient careexamines a broad range of different sources and techniques for gathering and analyzing health experiences. Providing an accessible and pragmatic overview of the diversity and richness of research in the field this book explores the strengths and limitations of different approaches, and assesses what each method can contribute to improving people's experience of illness, and the way that health services are delivered. The book looks at topics such as using focus groups to understand experiences of health and illness, patient surveys, and the internet as a source of information on people's experience. Using clear and engaging examples throughout, the book is accessibly written by experts in social science, health services, and health policy, and will be valuable to postgraduate students, healthcare practitioners, and individuals working in health and social policy, public sector management, and research.

Sue Ziebland, Reader in Qualitative Health Research and Research Director of Health Experiences Research Group, Department of Primary Care Health Sciences, University of Oxford, UK,Angela Coulter, Director of Global Initiatives Informed Medical Decisions Foundation, Boston, USA and Senior Research Scientist Department of Public Health University of Oxford, UK,Joseph D. Calabrese, Lecturer in Medical Anthropology, Department of Anthropology, University College London, UK,Louise Locock, Deputy Research Director, Health Experiences Research Group, Department of Primary Care Health Sciences, University of Oxford, UK

Sue Ziebland is an Oxford University Reader in Qualitative Health Research and research director of the Health Experiences Research Group, based in the Department of Primary Care Health Sciences. She is a research fellow at Green Templeton College, Oxford with a background in medical sociology. She has worked as a researcher in the academic, NHS and voluntary sectors and has published over 100 papers and chapters in social science and health publications. Since 2000 she has worked closely with the DIPEx charity which publishes qualitative health experiences research on the websites www.healthtalkonline.org and www.youthhealthtalk.org. Sue's other research interests include people's use of the internet for health information and qualitative research methods (which she teaches at various levels).

Joseph heads the Medical Anthropology Section at the Department of Anthropology, University College London. He completed his doctoral training at the University of Chicago, and has completed fellowships in Clinical Psychology and Medical Anthropology at Harvard Medical School and was the Cannon Fellow in Patient Experiences and Health Policy at Green Templeton College, Oxford. His research focuses on ethnographic projects that produce data with clinical and anthropological value, motivated by a desire to understand cultural diversity in approaches to health and healing. His fieldwork includes two years within the Navajo Nation studying a healing movement called the Native American Church, several months spent in Haiti attending spirit possession rituals, several years studying stigma and recovery efforts among persons with severe mental illness in Chicago, and work on an ethnographic study of the experiences of psychiatric patients at various teaching hospitals in the area of Boston, USA.

Louise is Deputy Research Director at the Health Experiences Research Group (HERG), University of Oxford, and Health Experiences Fellow at the Oxford Biomedical Research Centre. After a career in NHS management, Louise completed a PhD on healthcare rationing in the NHS market at the London School of Economics, and spent time researching healthcare organization, management and change at Templeton College, Oxford and the Health Services Management Centre, University of Birmingham. Since joining HERG in 2003, she has specialized in qualitative research into personal experiences of health and illness, and has led studies on antenatal screening and motor neurone disease. She now focuses on experiences of taking part in medical research, including clinical trials and cohort studies. Louise is interested in how personal narratives can be used to improve the quality and organization of care, and is researching their use in experience-based co-design, informing NICE guidelines and NHS commissioning.

1. Introduction, Sue Ziebland and Angela Coulter
2. Understanding the experience of illness and treatment, Angela Coulter
3. Ethnographic Approaches to Health Experiences Research, Joseph D. Calabrese
4. Observing interactions as an approach to understanding patients' experiences, Fiona Stevenson
5. Narrative Interviewing, Sue Ziebland
6. Using focus groups to understand experiences of health and illness, Jenny Kitzinger
7. Story-gathering: collecting and analysing spontaneously-shared stories as research data, Trisha Greenhalgh
8. Patient Reported Outcomes, Crispin Jenkinson and Ray Fitzpatrick
9. Patient Experience Surveys, Chris Graham and Penny Woods
10. Using the internet as a source of information about patients' experiences, Fadhila Mazanderani and John Powell
11. Systematic review and synthesis of qualitative research, Ruth Garside
12. Harnessing patients' awareness of adverse reactions to the drugs they take, Claire Anderson and Andrew Herxheimer
13. Engagement and inclusivity in researching patients' experiences, Sara Ryan
14. Participatory action research: using Experience-based Co-design (EBCD) to improve the quality of health care services, Glenn Robert
15. The policy landscape, Bob Gann