Dear NRAS Healthunlocked forum users

Dear NRAS Healthunlocked forum users

We are collaborating with Manchester University and the HealthUnlocked team to enable some important research to be done using anonymized data from posts in this forum as described in the link below. Research like this will be important to help people with RA in future.

We are likely to be collaborating with HealthUnlocked and the research community more like this in future which we anticipate will be very beneficial in the long term and will keep you informed of future studies as they arise. We will also ensure that the researchers keep us informed of the results of their research so we can let you know the outcomes of such studies.

You can find all the details relating to the research on our website at: bit.ly/2f9JmtR

Best wishes

Ailsa Bosworth

CEO, NRAS

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4 Replies

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  • As we are protected by anonymity, and collated, it seems good that someone is listening.

  • How will we know how this data is collected, is the forum to be monitored on a daily basis ? And what data is being collected ? Is this data then being passed on to say a pharmaceutical company. It does not explain the purpose of the research and who is collecting it can you reassure me that my private email is not being accessed by a third party. ?

  • Hello Medway lady

    The data collected will be posts where steroids are specifically mentioned along with any side effects. HealthUnlocked have software as part of the platform which scans for specific terms and words as this is how they are able to highlight posts about Methotrexate for example, so that if you are looking for information about use of MTX, you can search the posts which talk about this subject. As mentioned in the post about this research from HealthUnlocked, no identifiable email addresses or any other data which would link someone to a specific post will be passed on by them to the researchers at Manchester, all the data will be anonymous so you need have no fear that any party other than HealthUnlocked will have access to this data and it will not be 'sold' to anyone else. NRAS would never agree to any arrangement which compromised our HealthUnlocked users in any way at all. We believe that this kind of research using social media will help ultimately to improve care.

    I hope this reassures you.

    Best wishes

    Ailsa Bosworth, CEO, NRAS

  • I VERY much welcome this method of research and hope it is repeated as time goes by, especially for effective treatments without side-effects such as diet and exercise rather than what I consider the limited horizon of effects of drugs.

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