This article is taken from the Autumn 2012 issue of LymphLine, the LSN's quarterly newsletter available to all LSN members.
For details of how to become a member, click here.
The LSN launches Lymphoedema HealthUnlocked community
As you will remember, every couple of years we send out a questionnaire asking our members their opinions on the services we provide and suggestions on what they would like
to see us develop. One of the recurring topics of our last survey was the provision of an online forum or blog where those
of you living with lymphoedema could discuss the condition, how you cope with the challenges and ask questions. It has taken us several months to research how best to offer this service, in a way that
we could be confident was secure and manageable. We are now delighted to be able to announce that we are launching a lymphoedema community group working with HealthUnlocked.
HeathUnlocked is very experienced in providing patient groups with a secure place for members to share and compare health information, they currently provide similar services for over 100 UK patient charities and also work with NHS Choices and the Department of Health.
So what will the new lymphoedema community provide?
• A secure blogging platform where members can talk to each other and the LSN
• A question and answer section
• Full integration with other LSN online channels such as Twitter and Facebook
• A quick and easy way for the LSN to get your opinions on key issues
Frequently asked questions:
Is the Lymphoedema HealthUnlocked community safe and secure?
One of the reasons this initiative has taken so long to launch is that the LSN needed to be completely confident that those people using it were ‘safe’ whilst doing so. HealthUnlocked has passed vigilant and stringent security tests needed for them to work with the NHS and the Department of Health and we are confident that those using the community will be safeguarded at all times. There is no link between the information you provide for your LSN membership and the community.
How will I know that the information on the blog about lymphoedema is accurate and up to date?
Obviously the information members share about their own experiences is very much personal opinion, but the LSN will be moderating the blog and will use our own information and expertise to ensure you have the very latest information. Any answers from the LSN will be clearly marked with the LSN logo so you will be able to identify our input easily. We will also be able to remove information/ comments from all users that are judged to be inaccurate/dangerous or wrong.
Will the community cost the LSN or users anything?
HealthUnlocked do not make any charge to the LSN or those people who join the community. You will have the option to allow HealthUnlocked to use anonomised information for research that they often do for the Department of Health and others, but if you elect not to allow your data to be used you will still have full access rights to all the services.
Why do we need another blog when there are already Facebook sites and other blogs?
This community is not designed to replace other forums but it will be unique as it has no ‘social’ aspects to it and is the only blog that has input directly from the LSN.
How do we sign up to join the community?
The easiest way to join the community is to follow the link on the LSN website www.lymphoedema.org
We very much hope that you will find the new lymphoedema community useful, but it will only work if you use it, so please follow the link and join.