Developing a research and a web based information resource center
Ill health is isolating; patients in the most need of advice, information and support about their condition often struggle to reference anything more than basic information concerning their condition. This gap is more profound for members of marginalised communities. Furthermore, the formal channels of information concerning the management of ill health often overlook perhaps the most potent source of information; people whom have experienced specific states of illness themselves, and whom are best placed to share invaluable information about the experience and management of their condition.
Hugh Grant, patron of DIPEx
The aims of this proposed project are
1) to create a patient-centred agenda concerning a variety of health conditions, with the intent of challenging received wisdom and of generating new hypotheses concerning the experience and management of said conditions;
2) to conduct qualitative research about the experience of Israeli patients - Jews, Arabs, Bedouin, Druze and other ethnicities - of living with a variety of ill-health related conditions; and
3) to create a website in Hebrew and Arabic that will provide information and support to all communities in Israel, based on the rigorous scientific and participative research of patients' experiences. The website resource will bring the analysis of the stories together with audio and video clips from the interviews, will provide a source for information for people who are affected by different health conditions, for their circles of support and for professionals.
This website is intended to enable people from the various ethnic and social groups present in Israel - such as Arabs and Jews, immigrants and others - to bridge the social gap between them by sharing common experiences and by allowing them to act as a source of information for each other.
The project will benefit from the cooperation between Oxford University and the Israeli Centre for Qualitative Research of People and Societies at Ben-Gurion University of the Negev.
The Health Experiences Research Group at the University of Oxford has created a unique database of personal and patient experiences through in-depth qualitative research into over 50 different illnesses and health conditions. The results are published on two websites – www.youthhealthtalk.org and http://www.healthtalkonline.org , The websites receive about 2 million visits a month and have won several awards. Currently, there are a growing number of countries developing their own versions of Healthtalkonline using the same research methodology and grouped together under Dipex international, .including: Australia, Germany, Japan, Netherlands, New Zealand, Republic of Korea and Spain.
First Dipex Israel's Study
We are currently in the process of facilitating Dipex Israel's first study, with the co-operation of the Gertner Institute, on the experience of chronic pain.
In addition, we are looking for funding for a second study together with Prof Ahud Zmora, the Director of The Department of Neonatology, Soroka Medical Center. The study will focus on the experiences of parents of preterm babies.