British Lung Foundation
35,354 members42,716 posts

Research request

Hi everyone

The British Lung Foundation is delighted to be supporting researchers at Queen Mary University of London (QMUL) who are performing research into what makes online patients' communities effective.

Who is doing the study and what is it about?

This study will investigate what makes online patients' communities successful with the view of helping to replicate success. The study is being led by Dr Anna De Simoni at the QMUL Centre for Primary Care and Public Health.

What are the aims of the study?

The aim of the study is to explore what makes online patients’ communities successful and whether they could be developed into a tool that can be used in primary care to look after people who live with a health condition.

What are the potential benefits and impact of this study?

Results of this project will provide evidence to describe what makes an effective online patients’ community, and how these form and are maintained over time. Ultimately, we hope that this understanding will translate into better health care for people living with a health condition.

What is the BLF doing as part of this?

The BLF have given permission to the research team to access a limited amount of information about the BLF forum hosted by HealthUnlocked, strictly for research purposes.

What about protecting my data?

HealthUnlocked is a co-applicant on the grant and will anonymise information collected from the BLF forum database and provide this to the research team for the analysis. All data will be de-identified (i.e. any personal identifiable data will be removed) and will be handled in accordance with the UK Data Protection Act 1998. That means that none of your personal information will be given to the research team and they won’t be able to identify you. None of the data taken from the forum database will be passed on to anyone else.

If you have any questions about the research, please contact”

Thanks very much


6 Replies


Our success is a closely guided secret.

There was a interesting post which brought some constructive comments.


Right answer stone, but then you always do have the right answers. Thankyou:-)

1 like

Great thread, I missed it, thanks.


I never knew anonymise was proper word BUT what do i know.

Not sure like word TOOL in post BUT do like Data Protection Act 1998.

Many a short fall of practice managers NHS trust

But yer i dont really know about health communities BUT this is best have seen WITH most upto date contentment.

O yer thats what i forget CAN blf do post on british isles and nhs in relation to emergancy and oxygen use.

Few british isle trust are forgetting they signed NHS trust agreement and trying to inconveniences sick and disabled nationals when holidaying in british isles when it comes to returning oxygenz


Thanks Carole for letting us know what is happening.


I sent you a message related to this 2 days ago and have had no reply. Did you get the message?


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