1. Experiences of involving patients and the public: tales from the DIPEx project 2000- 2008 Sue Ziebland University Department Primary Health Care, Oxford

2. The DIPEx / Health Talk Online project Involvement from the participants’ perspectives Involvement from the research group’s perspective

3. From DIPEx to Health Talk Online (briefly) Qualitative, narrative interview studies on experiences of health and illness Original site www.dipex.org launched 2001; www.healthtalkonline.org launched 2008www.dipex.org www.healthtalkonline.org Nearly 50 conditions covered so far; over 2,000 interviews & 10,000 video audio and written clips; 1,250 Talking About summaries of issues raised by participants in interviews Commitment to involving public and patients as more than research participants

4. Participants’ experiences of involvement as respondents and members of Youth Panel

5. A participant’s perspective (article in Open Minds) Being a participant in the HealthTalkOnline minority ethnic experiences project was a unique and empowering experience. From the very beginning, the researcher and I were on an equal footing, a somewhat rare experience for a service user (or carer, for that matter). The researcher had all the attributes of a good mental health professional: she was genuinely interested in what I had to say; indicated that what I said had worth, and did not profess to know better than me about my own experiences. Having mental distress is such a personal, subjective experience: it is unique to everyone - but people’s personal stories around mental distress are rarely heard. What makes HealthTalkOnline.org an unusual and refreshing source of information is that you see and hear the person and not a set of symptoms with a human being attached; you see and hear the expert of the experience giving valuable information on how to manage mental health problems, and – believe it or not – how to heal and recover. These accounts show that there is more to recovery and coping than just taking medication.

6. Our experiences of involvement Raising funds: as co-applicants and instigators Guiding research appointments panel advisory panels steering group reviewing TA summaries and clips

7. Publications: eg Locock L, Crawford J, Crawford J. The Parents’ Journey: continuing a pregnancy after a diagnosis of Patau’s syndrome. BMJ, 2005; 331; 1186-9 Dissemination: newsletter articles, conference presentations, ambassadors, media launches Youth panel: Strategic planning for new projects training in video making work on re-design

8. Conclusion Instigating, planning and disseminating vs conducting the research Comfort and skills – projects differ Rewarding in ways we might not have anticipated (though disappointments in funding) Qualitative research seeks participants’ perspectives – but still considerable benefits for us & participants