Andy Jackson
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Help us build our Patient Community

Andy Jackson
Posted by
30 Jun 2015

Find out more about how you can help us build and support our patient community

One of the ways in which we're trying to support patients living with and beyond blood cancer is through by providing a safe space for people to share experiences, ask questions and support one another in the form of our online patient community. Many of you have already done so much to help us grow this community through your brilliant blogs which have been so useful to so many patients and their families.

However to take it on to the next level we need to make it a really active area of the website where people are actively engaging with each other on a regular basis. Building a culture like this will take time however here are three ways that you can get involved straight away and make an immediate impact:

1. Writing blogs

To make the patient community section a place that people want to come back to we need to have a regular stream of blogs coming through. We've started this process already by getting in touch with a number of patients who we've got good relationships with to encourage them to start blogging however it would be fantastic if you could also get more involved especially if you haven't written a blog before. 

You can blog about anything in relation to blood cancer from treatment and diagnosis right through to side-effects, impact on friends and family and getting back in to work.

If you're interested but not sure on what to write about or how to get started then please don't hesitate to get in touch by dropping us an email at ambassadors@bloodwise.org.uk

More information on how to get started is also available in our patient blogging guide.

2. Leaving comments on others' blogs

Going forwards we want the patient community to be a place where patients and family members are engaging and supporting one another. In the longer term we're hoping that a forum will be the centre of the conversations however in the mid to shorter term it would be great if you could help us start to get the culture under way by leaving comments on some of the patient blogs as and when they come in.

People can get anxious about being the first to leave a comment so having a few of you leading the way will really embolden others to get involved. Leaving a comment will also help encourage the blogger to get involved in the conversation and possibly encourage them to write another blog in the future. This has certainly been the case in the past on blogs where we've seen conversations develop.

N.B. You need to be signed in to leave a comment so if you don't yet have an account you'll have to sign up first before you can start engaging with blogs.  

3. Telling others about the patient community

To grow the community and get more people involved in the conversation and writing blogs we need more people to be aware of it's existence. Any help you can provide in this regard whether it be by sharing the link to the patient community landing page either on your Facebook page or in patient Facebook groups or forums that you are part of would be greatly appreciated. Some of you have actually already started doing this online in groups on Facebook. Here's a great example from Dan Holloway:

The patient community isn't the easiest to find at the moment so if you do want to tell others about the community it's probably best to share the direct link to the landing page: https://bloodwise.org.uk/our-community/patient-voices

Similarly, if you know of any one who would be interested in writing a blog for us do pass on my details as I'd be more than happy to talk to them more about the community and writing a blog.

Helping us improve the patient community

We're currently making some improvements to the website which I know that our digital team are very keen to get your thoughts on in due course. 

The blogging section will NOT be included in the original test version of the site which you'll all be invited to be a part of testing however we are looking to make significant changes to make the section work better for you and deliver the things that you want it to deliver. We want to make the patient communit the best it can possibly be and this can only be achieved by getting your feedback and ideas and including you throughout the development process.

If you have any thoughts, feedback or ideas about the current patient community or ways that we can make it better please do get in touch with us at ambassadors@bloodwise.org.uk - we'll pass on all details to the digital team and keep you posted on how everything progresses.

In the meantime do keep blogging and thank you so much for all your wonderful support of each other and other patients and familiies.