Research study - how this forum supports those newly diagnosed with RA

Hello. My colleague Jo Angouri and I (Tessa) will be carrying out some research into how this forum supports those with a new diagnosis of RA to live with their condition and make the most of the resources available to them. I have been a researcher in the field of rheumatology for 8 years now and have become really interested in how membership of an on-line community such as this is experienced. Jo has been doing research on identity and she is very interested in how on-line groups develop distinct norms and ways of supporting their members.

We will be looking at posts that already exist in the forum. NRAS has given us permission to do this and we want to reassure you of anonymity in anything that we write from this research. We hope that you see the value in us studying how forums can be useful to people living with chronic conditions and don't mind our presence on your forum! If you would be interested in hearing more about what we do or you wouldn’t mind talking to us about your own personal experience please do get in touch. We would love to hear from you.

27 Replies

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  • Can you ask NRAS to put up a post about this please? You say that you have their permission, which sounds as if you've basically been checked out by them, but then anyone could say that!

  • I agree with helixhelix, I think NRAS should ask our permission before any research takes place. I' m very supportive of genuine research, but there are protocols to be observed, and everybody should have the right to opt out.

  • Can I ask that you do NOT use any of my posts or comments in your research, I thought it was all data protected, now I am worried about this site.

  • Hello

    Contact HealthUnlocked NRAS before any outside work is undertaken I have reported your situation

  • Hello

    Sadly I would prefer that my posts and questions not be used in your survey, as I am on several sites and would prefer privacy for them

  • I do NOT give permission to use any of my posts at this point in time.

  • Hello

    Please be reassured that we have met with NRAS about this research study and have their support. I have been in contact with them to ask that they confirm this on this thread.

    I have worked with NRAS on two previous studies, both surveys, and have regularly met with their staff at the annual rheumatology conference. My colleague, Jo Angouri, is an Associate Professor at Warwick University and I, Tessa Sanderson, am a post-doctoral researcher (officially still on maternity leave until the beginning of next month!).

    Please also be reassured that posts will not be used where permission is not granted. Where members are happy for their posts to be studied, any text from posts will be anonymised. Usernames will also not be used.

    This research is important since on-line communities for long term conditions are increasing in number and the study will enable policymakers to better understand what support is required and how self-management develops. I hope that members will be able to also communicate directly with us to explain their experience of being a member of the forum when newly diagnosed, since the team at NRAS suggested this that might be one area that we focus on.

    Many thanks

    Tessa

  • Tessa, I recently joined this forum on a whim more than anything. I am from Canada and don't believe anything like this exists for me locally. I first received the news that I have RA in December 2011, and have been struggling to both understand this disease and what it will mean for me and my family (my youngest was only 5 months old when symptoms first started to appear). I have spent a lot of time on Google and on personal RA blogs. There are a many people with RA and other autoimmune diseases who feel unsupported, because pain is not something you can see, but only something you can feel. The pain is horrible, a true misery, and seeing your body degrade is downright depressing. I actually got things under control beginning September 2012, and had a wonderful year of discovery, where I regained my mobility and was even able to create new goals for myself. I also found the blog of someone with RA who has maintained a positive attitude and who shares when she is doing well. It was on her blog that I made my first ever online comments, and she replied to my comments! It felt like I had found a kindred spirit. Now that I have found HealthUnlocked, I hope to meet other kindred spirits, people who not only commiserate, but who share successes too. I am not on twitter or facebook and don't maintain my own blog, so sites like this one are important for me.

  • Welcome to the site! Normally we're very friendly and supportive to each other, but occasionally we odd people coming on to the site trying to sell us snake oil so don't take our sensitivity over the post the researchers put up as the general approach.

    We have people from a numbers of countries here, so always good to have more to share experience of how RA gets treated around the world)

  • Thanks for your message! I can certainly understand the sensitivity. Just want to share my experience. I know some people choose to suffer in silence, finding solace here. I have so far taken the open-book approach, and to h*ll with those who don't understand, but I do appreciate finding this community and hope I haven't stepped on any toes (ouch!) with my frankness!

  • Hi Karen, yes a very warm welcome to you. As Helix says, this thread doesn't sound the warmest but I think it's just made us a little protective of our world.

    Anyway, I really hope you find kindred spirits on here. Like you I was nervous at first about posting but once I'd done it a couple of times started to relax.

    I hope you find that this site offers you help and support when you need it and a bit of a giggle too from time to time. It really does help so much to be able to ask questions or to share with people who really understand as they are going through or have been through similar. Rx

  • Thanks! I do appreciate that! I actually think this is what the researchers are seeking, to be honest. How we all as a community come together to support one another and how that support and sense of community actually provides much better medication - at least emotionally - than all of the DMARDs, NSAIDs, etc. I already feel more supported and heard, just being part of this community. So thanks to all of you who have built this up for us newbies!

  • Sorry, but NRAS do not have the right to give permission without our iNFORMED CONSENT.

    I am sure your motives are good, and I have in the past taken part in and conducted research. BUT you do not just post saying you are going to do it, you ASK for our permission. The data protection act prevents it being done any other way. To take part is an individual decision

  • Dear all

    Please allow me to put all your minds at rest. Tessa and Jo have been given permission to conduct this research on this forum by NRAS. If you visit "Terms of use" the section on privacy you will see that NRAS do have permission to do so. NRAS has worked with Tessa in the past and we can certainly vouch for her integrity and that this research is of great importance and has had correct research ethics approval. Please remember that Health Unlocked is a public forum and anyone can register and join therefore view the posts. It was in the interest of true transparency and respect for our users that we asked Tessa and Jo to give a short explanation of what the research was and what it entailed. No users will be individually identified unless they wish to contact Tessa and Jo to participate more fully in the research. If anyone is still concerned please don't hesitate to contact me directly at clare@nras.org.uk.

    Yours

    Clare

    Director of External Affairs

  • I think you are rather missing the point, we should have heard from yourselves in the first instance before this was posted. That way all our fears would have been allayed, and we would have known they were genuine people. As you know there have been instances in the past where people have posted that should not be here.

  • When there have benn any inappropriate posts NRAS has removed them as swiftly as possible. However, the researchers in this case had followed the correct process and asked permission to conduct the research.Yes in hindsight NRAS should have put the post up rather than the researchers directly and I apologise that this didn't happen on this occasion.

  • I am still not reassured, I was certainly not aware that the terms and conditions meant that NRAS could give this sort of permission. We have a right to privacy, some messages are for members only, so are not available to the public. NRAS has done itself no favours by this, I have severe doubts about all info they hold, I thought my privacy would be respected. It does not matter how worthy the project, even common courtesy would mean that our permission was sought.

    I think NRAS is on very dodgy ground here.

  • Yes, this has been mishandled from the start

  • Hi Everyone,

    Our usual policy would be to post on behalf of a researcher but in this instance as the research involves finding out about how social media helps people who are newly diagnosed, it made sense that Tessa and Jo can have an account to carry out their research.

    As they mentioned, anonymity will be respected and all they are looking at are posts, not any personal data. I have said recently that the team here at NRAS don't hold any personal information about the members on here, this is retained by Health Unlocked, and we cannot pass any details on to any third party.

    We actively do our best to protect the community here from any spamming with HealthUnlocked’s assistance and thank you to those who brought it to our attention as a potential spam account. For now until we clarify with HealthUnlocked how this research fits into the data sharing rules (as anonymity is retained), no research will be conducted and we will update you further tomorrow.

    Thank you,

    Ruth Grosart

    NRAS Digital Media Coordinator

  • I have to agree with others on here. To me this feels a bit like an invasion of our privacy. This is where we all come to rant, to moan about our loved ones or rave about them, to share a funny storry or just have a good old moan. The best thing about it is that we all feel completely safe to do this and it's our own little world to share our problems with fellow sufferers who understand us and don't judge us.

    As sufferers of RA we have to put up with a lot and this can be our sanctuary. It does fell a little like a real breach of trust.

    It may well be that terms and conditions allow this, and yes I'm sure people could create a username on here and spy on us without us knowing, and maybe they already have. But it just doesn't feel right. Sorry, but I'd like my privacy preserved please.

    Thanks, Rosie

  • Well Said Rosie....

  • I personally have no problem whatsoever if you would like to look at or uses my posts! I have found this site helpful and any help as a newly diagnosed patient would have been fantastic. I comment on this site and a local patient involvement site so I am aware how important research of this type is. Steph

  • Dear All

    I would like to apologize wholeheartedly on behalf of NRAS for the fact that the researchers posted directly before we had opportunity to introduce the research on their behalf. We had discussed their research with them in detail, we have worked with them before and done some really good collaborative research using the NRAS membership so we know them well and trust in their integrity and in the value of the work they are proposing to do in regard to looking at how community sites such as this work and how people support each other. This kind of peer to peer support is being studied by the Department of Health and others in great detail now as it forms such a big part of the work that charities like us do. However, the post went up before we had opportunity to introduce it and reassure the HU community that the work would be completely anonymised and ask if anyone would like their posts to be opted out. Again I can only apologize, we are human and occasionally (and it is only very occasionally we slip up). We guard your privacy and our members' data completely in accordance with data protection legislation, however, this is a public site which anyone can join from anywhere in the world. HealthUnlocked have notified us that this research does not violate terms of use of this site or the data protection act as content is not included in this.

    I hope that you will all accept this apology and now draw a line under this. We would like to introduce this research programme and believe that it will help health professionals and policy makers better understand how chronic disease affects people and the kind of help they need. Please notify us directly if you do not wish to have your posts used in the research please notify ruth@nras.org.uk who will inform the researchers directly. Just a reminder to you all that neither HU nor NRAS have access to your personal information and therefore cannot pass this onto third parties.

    Best wishes

    Ailsa

  • I will email Ruth later but just to put on record that I want to opt out of this and do not give permission for any of my posts, questions or comments to others to be included in the study. I always make my posts private so only people joining the forum can read them. I've given enough information away to be identified even if the research is anonymised as I have a rare condition as well as RA. On a separate note I've taken part in research when I was asked before telling my story (face-to-face in hospital). Thanks, Fran

  • Hi Fran,

    I have taken note of this and anyone else can also just Private Message me if they wish to opt out.

    Best wishes,

    Ruth

  • Thank you Ruth, much appreciated.

  • I wouldn't want quoting directly buy only four months post diagnosis I thank god for this site. Im probably into my second decade of psoriatic arthritis having been labelled at best clumsy and at worse imagining it all I am relying on peoples experience here to make me feel reassured

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