In her editorial (29/1/14) Fiona Godlee refers to making patient partnership a reality. One recent example of such a partnership, and in a field which has very little history of partnership, is the VOICE project, which was jointly developed by Independent Cancer Patients’ Voice (ICPV) and Bart’s Cancer Institute (BCI).
To date, patients have had very little involvement or experience of laboratory based research which can cause challenges for patients and carers, who often have a limited understanding of cancer biology.
Researchers at BCI and members of ICPV therefore worked in partnership to develop a 5 day training course for cancer patient advocates which aims to lead patients through the research process beginning with basic biology, through to experiments in the lab and on to discussing clinical trials.
In addition to attending lectures and performing experiments participants were able to meet and speak with cancer scientists. We believe that this project is the first of its kind in the world to offer people affected by cancer an opportunity to spend time in laboratories in order to build a practical understanding of cancer biology.
The inaugural course took place from 9-13 September 2013. Early feedback suggests that participants are more confident about discussing laboratory based research in their roles as advocates having gained a better understanding of how work is done by laboratory-based researchers. An additional impact is that scientists who were involved in the course have been both motivated and inspired by their contact with participants.
We are planning a six month follow up of participants to assess the longer term impact of the course, and will be repeating it in 2014.
For more information see: independentcancerpatientsvoice.org.uk/voice-science-for-patient-advocates/
Competing interests:
No competing interests
11 March 2014
Adrienne Morgan
Patient Advocate
Maggie Wilcox, Mairead MacKenzie, Bec Hanley, Richard Grose, John Marshall, Louise Jones
Rapid Response:
Re: Towards the patient revolution
In her editorial (29/1/14) Fiona Godlee refers to making patient partnership a reality. One recent example of such a partnership, and in a field which has very little history of partnership, is the VOICE project, which was jointly developed by Independent Cancer Patients’ Voice (ICPV) and Bart’s Cancer Institute (BCI).
To date, patients have had very little involvement or experience of laboratory based research which can cause challenges for patients and carers, who often have a limited understanding of cancer biology.
Researchers at BCI and members of ICPV therefore worked in partnership to develop a 5 day training course for cancer patient advocates which aims to lead patients through the research process beginning with basic biology, through to experiments in the lab and on to discussing clinical trials.
In addition to attending lectures and performing experiments participants were able to meet and speak with cancer scientists. We believe that this project is the first of its kind in the world to offer people affected by cancer an opportunity to spend time in laboratories in order to build a practical understanding of cancer biology.
The inaugural course took place from 9-13 September 2013. Early feedback suggests that participants are more confident about discussing laboratory based research in their roles as advocates having gained a better understanding of how work is done by laboratory-based researchers. An additional impact is that scientists who were involved in the course have been both motivated and inspired by their contact with participants.
We are planning a six month follow up of participants to assess the longer term impact of the course, and will be repeating it in 2014.
For more information see: independentcancerpatientsvoice.org.uk/voice-science-for-patient-advocates/
Competing interests: No competing interests