Ticking boxes or meaningful partnership – The experience of lay representation, participant and study partner involvement in Brains for Dementia Research
| Autor: | Gillian Hayes, Helen Costello, Paul T. Francis, Shirley Nurock, A Cornwall |
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| Rok vydání: | 2018 |
| Předmět: |
Biomedical Research
Tissue and Organ Procurement Sociology and Political Science Community Participation Representation (systemics) Brain General Social Sciences Cognition General Medicine medicine.disease Developmental psychology 03 medical and health sciences 0302 clinical medicine General partnership Donation Cohort medicine Humans Dementia 030212 general & internal medicine Psychology 030217 neurology & neurosurgery Dementia research |
| Zdroj: | Dementia. 17:1023-1034 |
| ISSN: | 1741-2684 1471-3012 |
| Popis: | Brains for Dementia Research is a planned brain donation project with serial assessments during life. Lay input helped conceive and shape Brains for Dementia Research and over time a growing number of lay volunteers have engaged with the project in almost all areas of activity. Lay representatives serve on the management and tissue banking committees, have spoken at recruitment and team events, and have reviewed all public and participant facing communications. Recruitment and retention has been greatly facilitated through lay involvement with community organisations and creating regional/national media opportunities. The experience of Brains for Dementia Research has been that involvement of the public and study participants has the greatest positive impact on study outcomes when the relationship is a genuine partnership. Purposeful inclusivity allows lay people to contribute in situations where professionals might otherwise dominate. Maintaining an environment where both lay and professional staff can think creatively, express ideas and opinions, problem-solve and work well together has had a synergistic effect on project outcomes. Ensuring good communication between the various professionals and lay representatives has also been part of the success in keeping the cohort flexible and able to respond to the changing landscape of clinical trials, the emergence of ‘big data’ and to maximise the future potential of the cohort. Our lay representatives may also be study participants, study partners, or have personal experience of dementia and bring an energy, enthusiasm and commitment to what they do, that in turn encourages the professional team. |
| Databáze: | OpenAIRE |
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