Narratives of health and illness for Healthtalkonline 2012 V1
Research type
Research Study
Full title
Narratives of health and illness for www.healthtalkonline.org (formerly DIPEx)and www.youthhealthtalk.org
IRAS ID
112111
Contact name
Sue Ziebland
Contact email
Sponsor organisation
Oxford University Hospitals NHS Foundation Trust
Research summary
The aim of the research programme is to improve understanding of people’s experiences of health and illness and provide online resources for people living with a wide variety of health conditions, their families, friends and the health professionals involved in their care. \n\nwww.healthtalk.org (HTO) and www.youththealthtalk.org (YHT) are growing resources which currently cover over 100 health conditions. The sites are based on qualitative interviews and features an analysis of the 25 most important issues identified in the interviews and around 250 video, audio and written interview clips. \n\nHTO and YHT are not ‘just’ health information web pages, nor are they a patients’ chat-room, nor one of the many health websites that now have an area for patients’ experiences: instead each site is based on a rigorous qualitative research study of people’s first-hand experiences. HTO studies may therefore be taken as a real indication of what it is like to experience health and illness, and allows access to real-life experiences (via the websites) to anyone whose life is touched by these issues.\nInterviews collected within the programme will be used in a variety of ways:- for academic dissemination in peer-reviewed journal articles and conference presentations; for secondary analysis by academic researchers; to develop information for patients (e.g. on NHS Choices, NICE and other approved websites); to develop training packages for professionals in collaboration with, for example, universities, trusts and Royal Colleges ; and to contribute to the award-winning websites at www.healthtalk.org (formerly DIPEx)and www.youthhealthtalk.org.\n\nAs part of an evaluation programme a selection of sites will be reviewed pre-launch to ensure that the site reflects people’s experiences of each condition covered. Health professionals will also be invited to comment on the proposed content of the sites to ensure that they address the issues that are relevant to the consultation.\n\nThe studies benefit from the experience and tried and tested methods of the Oxford research group. The team has spent 17 years developing and delivering the methods, during which time we have raised over £7,000,000, written a researchers’ handbook, established training for research staff, secured some core start-up funding (for the cancer modules) from the Department of Health (Section 64), gained approval for the study methods from the Multi Centre Research Ethics Committee (involving extensive negotiation of the complex ethical issues) won several high profile awards and developed the collaborations involved in setting up and running the website. The team have increasingly wide links with researchers, professionals, policy-makers and charities which focus on a wide range of health issues, and can thus harness a wealth of expertise at little or no additional cost.
REC name
South Central - Berkshire Research Ethics Committee
REC reference
12/SC/0495
Date of REC Opinion
3 Sep 2012
REC opinion
Favourable Opinion