Research project
Title: Understanding parents' attitudes towards the use of NHS data for research purposes in the context of neonatal services
Project timescale: From 01 November, 2009 to 31 October, 2012
(Added to website on: 06 October, 2010 - Date last updated: 14 December, 2010)
Source of funding:
Programme Grants for Applied Research (PGfAR) (NIHR)
Aims: The research project is part of the larger NIHR Programme Grant: Medicines for Neonates. We are working in collaboration with the voluntary organisation, BLISS. Our project concerns parents and carers who have had babies in neonatal care. A great deal of health data is collected from babies during this period which would be useful to researchers; at the moment it is not automatically used for research purposes. This project sets out to explore with parents (who have had babies in neonatal care) their views about this issue. It aims to find out what might influence parents' decisions to allow their babies' data to be used for research; in what forms it might be used; and when and why they would want the right to say 'no'.
Research designs used:
Evaluation
Study of views/experiences
Methods used to collect data:
Questionnaire survey
Research project description: There are three stages to the project. The first involves working in a participatory manner with two small groups of parents who have had babies in neonatal care. Through a series of workshops we are going to explore the issues involved in consenting/ not consenting for babies' routinely collected data to be used for health research purposes. We will design a questionnaire and recruitment materials to be used in the second stage of the project. The second stage involves a large questionnaire survey of parents in four neonatal units across the country; the third stage involves evaluation of the participatory processes employed. There will be further opportunities at this point for the parents involved in the workshops to take part in other neonatal research in an advisory capacity.
Stages at which the public were involved:
Writing about the research eg
publications, newsletters
Disseminating research
Assisting in finding and designing appropriate
ways of approaching participants
Training other people to carry out the research
Speaking about the research eg
workshops, presentations
Planning the research
Designing the research instruments
(eg questionnaires, patient information sheets)
Description of public involvement in research stages: Parents are going to be involved in designing a questionnaire survey through a series of workshops. They will design the questionnaire itself as well as the recruitment materials and recruitment processes. They will be given the opportunity to be involved in the dissemination of the project through spoken and written means.
Training and support provided for either members of the public or researchers involved in the project: Training and support will be provided by the researcher during the workshops. Guest speakers will be invited to talk about relevant areas.
Examples of ways the public have made a difference to the research project:
Evaluating the impact of public involvement in the research:
Details of publications or reports resulting from the research:
Links to Reports:
Was/is your project user controlled: Not Known
For further information on the project, please contact:
Dr Victoria Foster
Research Associate
University of Manchester
University Place
Oxford Road
Manchester
Greater Manchester
M13 9PL
United Kingdom
Victoria.Foster@manchester.ac.uk
01613067666
Professor Alys Young
University of Manchester
Alys.Young@manchester.ac.uk
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