"Gaining consent retrospectively"
About the research
The 2001 foot and mouth disease epidemic had an enormous impact on the economic, social and political life of Cumbria. A 30-month research project, funded by the Department of Health, was designed to produce evidence specifically about the human health and social consequences of the epidemic.
A standing panel of 54 local people from North Cumbria produced more than 3,000 weekly diaries about the impact of the crisis and the process of regeneration. This community-based approach to research meant that the panel members were seen as the ‘experts’, those who could best describe the toll that the epidemic took on their lives, their families and their communities.
About the data
The research team were surprised by the quantity and the quality of the data received.
The study represented a detailed record of recollections of the 2001 foot and mouth disaster in North Cumbria and the subsequent 18 months of coping and resuming everyday work and home life.
This epidemic was probably the biggest rural disaster since the Second World War: a traumatic and devastating experience for all those who were affected by it. It was a national crisis and was probably one of the greatest social upheavals since the war.
The dataset offers striking immediacy of contact with this event and constitutes unique, prime and everyday historical evidence about the disaster. Moreover it offers rich insight into Cumbrian rural life at the beginning of the 21st century.
The dataset as a whole tells a collective story about a significant set of events and forms an indispensable part of respondents’ documented heritage and wider cultural life.
This provided the impetus for archiving the dataset, including the audio material. Project respondents and the project’s advisory group were favourable to the idea of archiving the data. The dataset would be of interest to a local archive, and also of international significance.
Following a research seminar at Lancaster University, colleagues expressed a conviction that the data should be archived; subsequent discussions with project respondents and the project’s advisory group reinforced this.
The research team sought expert advice from a copyright specialist to help draft terms of agreement which would give respondents a series of options about how their diaries, copies or portions of diaries, and/or their audio material would be archived.
In this way depositor consent forms were drafted for the paper/written material and for the audio material. These were duplicated for both the local and the national archive.
Through the study newsletter, respondents were also given regular updates and detailed information on archiving.
Some of the data collected from the study recounts traumatic events at individual and community level and the research team was therefore mindful of the sensitive nature of this dataset.
The 18 months of diary collection, fostered strong and trusting relationships between researchers and research respondents. It was therefore proposed to discuss archiving individually with panel members, preferably in their own homes.
Reuse publications and outputs
This paper briefly outlines the study and data collection and tells the story of how and why the study data has been archived.