This article is taken from the Autumn 2016 issue of LymphLine, the LSN's quarterly newsletter available to all LSN members.
For details of how to become a member, click here.
The Lymphoedema Research Prioritisation Partnership
Shaping the future of lymphoedema research in the UK
By Emma Underwood, Lymphoedema Specialist (OT)
In order to ensure that people living with lymphoedema receive the most clinically and cost effective treatment, we need more research evidence. However, to ensure that research makes a real difference, it needs to address priority questions that are both representative of the needs of people living with lymphoedema and not biased by commercial interest.
The Lymphoedema Research Prioritisation Partnership aims to set research priorities for the management of lymphoedema in the UK through collaboration with patients, their unpaid carers and the healthcare professionals that treat them. This research is supported by both the Lymphoedema Support Network and the British Lymphology Society.
Why we need your help:
We want to know what needs to be improved about any aspect of treatment and management of lymphoedema (both non-cancer and cancer related) and will use your questions to help set priorities for research. Your experience of this condition will help us understand where research is needed that will make a difference to people’s lives.
Who can get involved?
We want to hear from you if you are over 16 years of age and:
- a person with lymphoedema
- an unpaid carer for, or family member of, someone with lymphoedema
- a healthcare professional working with people with lymphoedema
- an academic or researcher with an interest in lymphoedema
What will happen to your question(s)?
The questions which are submitted by you will be checked to ensure they have not been answered by existing research. They will then go through a process of prioritisation, to identify the research which is of most importance to patients, their carers and healthcare professionals. At the end of the process a top 10 list of research questions will be published and provided to organisations that fund research.
How to get involved?
We would like you to give us up to 5 questions about the treatment or management of lymphoedema that you feel need to be answered by research. Or in other words the questions about the treatment or management of lymphoedema that you and your healthcare professional have been unable to answer. You can complete the survey individually or on behalf of your support group. It doesn’t matter how big or small, all of your questions are important to us.
You can do this by completing the online survey which will take 10-15 mins https://plymouth.onlinesurveys.ac.uk/lrpp
The survey is open from 7th September – 7th November 2016.
Further Information
For further information or if you have any concerns about this process, please contact the lead researcher Emma Underwood emmalymphoedema@gmail.com or her academic supervisor, Dr Jenny Freeman jenny.freeman@plymouth.ac.uk
Thank you for supporting the partnership.
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