Health Experiences Research Group

— filed under: PHCResearchGroup

How is this illness going to affect my life? Can it be cured? How do I tell my friends children and family? What is it really like to have chemotherapy? Why did no-one tell me I’d feel like this? What should I do to be healthier?

The Health Experiences Research Group, since its inception in 2001, has been involved in a major programme of qualitative research to understand people’s experiences of health and illness. The research team was founded by Ann McPherson (who sadly died in May 2011) and headed by Sue Ziebland and Louise Locock.

Each project is overseen by an expert advisory panel which includes leading specialist clinicians, researchers, nurses, representatives from patient groups and appropriate voluntary bodies. For each illness or health issue, 30-50 people, from all over the UK and from different backgrounds, and with different experiences, are interviewed. The results of the research have been published in over 60 peer reviewed papers in clinical and social science journals, and on www.healthtalkonline.org (previously www.dipex.org), an award winning website which includes video and audio clips from a wide range of real patients. For the website, the narrative interviews on each condition are analysed thematically and approximately 25 summaries of the main issues that people have talked about are prepared. These are illustrated with approximately 250 video and audio clips from the interviews. www.youthhealthtalk.org is our site specifically for young people.

The websites are freely accessible 24 hours a day and attract one million hits per month. The websites are owned by the DIPEx charity chaired by Lord Andrew Stone. They now cover experiences of over 60 different conditions including cancers, heart disease, mental illness, chronic health issues, disability, as well as taking part in clinical trials, parents’ experiences of deciding about immunisation, and experiences of helpers and carers. This research is in contrast to many health information websites which only include limited accounts of patients’ own experiences, often confined to one or two unrepresentative stories, or presented as a forum or chat room which can be misleading. Thus this project is unique in using systematic qualitative research for each condition to gather the experiences of a broad range of people.

The site is used by patients themselves, their carers, friends and family. It is also extensively used for teaching and training by a wide variety of different health professionals and helping to improve the patient journey and dignity in care. There is huge potential to expand this work into helping the delivery of high quality health care for all as outlined in the report by Lord Darzi, and using it to inform policy makers and those involved in commissioning. The site is linked to NHS Choices and many other health information sites.

The research and websites are funded by the a variety of different funders including Department of Health, National Institute of Health Research, NHS and charities e.g Cancer Research UK, Macmillan, British Heart Foundation, voluntary groups and individual donations.

Courses run by the Health Experiences Research Group