Title |
From tokenism to meaningful engagement: best practices in patient involvement in an EU project
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Published in |
Research Involvement and Engagement, June 2015
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DOI | 10.1186/s40900-015-0004-9 |
Pubmed ID | |
Authors |
David Supple, Amanda Roberts, Val Hudson, Sarah Masefield, Neil Fitch, Malayka Rahmen, Breda Flood, Willem de Boer, Pippa Powell, Scott Wagers, on behalf of the U-BIOPRED PIP group |
Abstract |
This commentary talks about patient involvement in one of the biggest EU projects to date-U-BIOPRED. It describes how people and carers of people with asthma have been able to develop and drive their input and have their voice heard among the >200 healthcare professional project members. Five key principles for the success of the patient involvement group are presented: involve early, involve deeply, have patients feedback on project progress, include patients in dissemination and help patients convey their own story. This group has been used as an example for other EU-funded projects, and the patient involvement group will be maintained after the end of the project to ensure that their experience and knowledge can help develop best practice in the future. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
Canada | 4 | 25% |
Belgium | 2 | 13% |
United States | 2 | 13% |
United Kingdom | 1 | 6% |
Unknown | 7 | 44% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 11 | 69% |
Scientists | 3 | 19% |
Practitioners (doctors, other healthcare professionals) | 2 | 13% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
United Kingdom | 2 | 2% |
United States | 1 | 1% |
Unknown | 88 | 97% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Researcher | 17 | 19% |
Student > Master | 17 | 19% |
Student > Ph. D. Student | 14 | 15% |
Student > Postgraduate | 7 | 8% |
Student > Bachelor | 5 | 5% |
Other | 14 | 15% |
Unknown | 17 | 19% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 17 | 19% |
Social Sciences | 13 | 14% |
Biochemistry, Genetics and Molecular Biology | 6 | 7% |
Psychology | 6 | 7% |
Nursing and Health Professions | 5 | 5% |
Other | 20 | 22% |
Unknown | 24 | 26% |