Idea Workshop One: Ethnicity and Clinical Trials
Ethnicity, Health and Clinical Trials:
Problems of Rationale, Recruitment, Participation and Reporting
IDEA at the Society for Social Medicine's 2011 Annual Scientific Meeting, 2011 Have a look at our poster on the clinical trial 'straightjacket' in ethnicity and health research: IDEA at SSM 2011
Our inaugural IDEA-R workshop tackled the complex and dynamic relationship between ethnicity and participation in clinical trials. Dr Kamila Hawthorne got us started with an insightful presentation of her own Cochrane Review of clinical trials on ethnically tailored health education. This presentation (see videocast and presentation below) started a wide ranging conversation. We collectively considered the role of clinical trial as a 'gold standard' -- whether this was practical, appropriate or even ethical in relation particularly to more complex health interventions -- and the limitations of the systematic review methdology. We also addressed the question of institutionalised racism in the exclusion of ethnic minorities and other 'minoritised' communities from clinical trials, and (drawing on the expertise of Isabella Santamaria) the legal position of clinicians and researchers designing clinical trials in light of the 2010 Equality Act, among other current concerns. After a pleasant lunch, we re-convened to continue our discussions, and to consider trans-disciplinary approaches to reducing the constraints and exclusivity of clinical trials. Dr Lai Fong Chiu started us off with a brief presentation on improving patient and community empowerment through action research (see slides below). Professors Ala Szczepura and Mark Johnson brought in several key papers from the NHS (see slides below) After a full discussion -- and much needed break for coffee and cupcakes -- we broke into two working groups, one tasked with the problem of how to empower researchers to be more inclusive in designing clinical trials; and the other with finding constructive ways to promote greater attention to diversity and inclusiveness at every stage of the cycle from research proposal to outcomes and follow-up research. A short video of our concluding discussions and oucomes is available below. As part of our preparation for this workshop, participants nominated key articles in their own fields; these (and others which emerged from a transdiciplinary literature review) are summarised in the Workshop Bibliography .
Presentations (Faster to download): |
Discussion Videos (slower to download): |
Participants:
Dr Roberta Bivins |
Professor Gillian Hundt |
Dr Hannah Bradby |
Martin Moore |
Dr. Lai Fong Chiu |
Professor Mark Johnson |
Dr. Nisha Dogra |
Isabella Santamaria |
Dr Kamila Hawthorne |
Professor Ala Szczepura |