Understanding and Using Health Experiences

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. Angela is a health policy analyst and researcher who specialises in patient and public involvement in healthcare. She is Director of Global Initiatives at the Informed Medical Decisions Foundation, Boston, and Senior Research Scientist at the Department of Public Health, University of Oxford. She is a Senior Visiting Fellow at the King's Fund in London, holds Honorary Fellowships at the UK Faculty of Public Health and the Royal College of General Practitioners and is a Trustee of National Voices. Angela has published more than 250 research papers and reports and several books. Her latest book, Engaging Patients in Healthcare, was published by Open University Press in August 2011. She was the founding editor of Health Expectations, an international peer-reviewed journal on patient and public involvement in health care and health policy. In January 2012 she was awarded the Donabedian International Award in healthcare quality for her work on patient-centred care.

1. Introduction ; 2. Understanding the experience of illness and treatment ; 3. Ethnographic Approaches to Health Experiences Research ; 4. Observing interactions as an approach to understanding patients' experiences ; 5. Narrative Interviewing ; 6. Using focus groups to understand experiences of health and illness ; 7. Story-gathering: collecting and analysing spontaneously-shared stories as research data ; 8. Patient Reported Outcomes ; 9. Patient Experience Surveys ; 10. Using the internet as a source of information about patients' experiences ; 11. Systematic review and synthesis of qualitative research ; 12. Harnessing patients' awareness of adverse reactions to the drugs they take ; 13. Engagement and inclusivity in researching patients' experiences ; 14. Participatory action research: using Experience-based Co-design (EBCD) to improve the quality of health care services ; 15. The policy landscape