Article type
Year
Abstract
Background: Relatives of people with dementia often want to participate in research, but their time is limited because of their caregiving role.
Objectives: The first, innovative part of the proposal is to recruit carers and former carers of people with dementia to a well-defined task: reading trial reports, extracting basic information, and entering it into the Dementia Group’s online register of studies -ALOIS. The volunteers are also invited to work through a series of modules about EBM using examples, all directly related to dementia.
Methods: A range of publicity and outreach methods were used to recruit volunteers (see leaflet attached). Also an EBM skills workshop for carers was held in Oxford which was very well attended. We will conduct a before-and-after study where the participants' skill at the coding task will be rated, and a questionnaire will be used to assess changes in involvement with dementia-related NHS activities, primary dementia research, and attitudes.
Results: At the project half-way point (see poster attached), we had recruited 35 volunteers (20 carers or former carers). We have now reached 40, and this has translated into 65 new study records being coded by new volunteers and published on ALOIS, and a further 70 studies currently assigned to volunteers for coding. A slightly unexpected but welcome development is that schools are now interested in participating, and we are currently looking at how adapt the model for this purpose. We are also hopeful that the model might be further adapted as a Cochrane-wide 'citizen science’ initiative in conjunction with the development of the Cochrane Register of Studies.
Conclusion: Involving and training volunteer 'expert carers' in maintaining a trial register is feasible. We will explore whether the model can be adapted to bring wider benefits for public engagement with the NHS and participation in primary research.
Objectives: The first, innovative part of the proposal is to recruit carers and former carers of people with dementia to a well-defined task: reading trial reports, extracting basic information, and entering it into the Dementia Group’s online register of studies -ALOIS. The volunteers are also invited to work through a series of modules about EBM using examples, all directly related to dementia.
Methods: A range of publicity and outreach methods were used to recruit volunteers (see leaflet attached). Also an EBM skills workshop for carers was held in Oxford which was very well attended. We will conduct a before-and-after study where the participants' skill at the coding task will be rated, and a questionnaire will be used to assess changes in involvement with dementia-related NHS activities, primary dementia research, and attitudes.
Results: At the project half-way point (see poster attached), we had recruited 35 volunteers (20 carers or former carers). We have now reached 40, and this has translated into 65 new study records being coded by new volunteers and published on ALOIS, and a further 70 studies currently assigned to volunteers for coding. A slightly unexpected but welcome development is that schools are now interested in participating, and we are currently looking at how adapt the model for this purpose. We are also hopeful that the model might be further adapted as a Cochrane-wide 'citizen science’ initiative in conjunction with the development of the Cochrane Register of Studies.
Conclusion: Involving and training volunteer 'expert carers' in maintaining a trial register is feasible. We will explore whether the model can be adapted to bring wider benefits for public engagement with the NHS and participation in primary research.
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