New Rheumatoid Arthritis Information Web Site | Arthritis Information

 

Hi Everyone

Just to let you know we have launched a new site for RA patients and caregivers

http://www.rheumatoid-arthritis-information.com/

Please do share the site with your friends and loved ones.

If you have any link suggestions that would be really great – so do get in touch

Belinda
http://www.rheumatoid-arthritis-information.com/Its a very good and informative site, thank you. What I like about the site, it is not full of medical jargon that the everyday person hasnt heard before. Thanks Belinda.. I'll check it out as soon as I get home!! Hi Belinda, I just visited this website and, honestly, I am quite disappointed! It is poorly written and inconsistent.  There is nothing there other than the barest of bones information.  I just don't see how one can explain RA in a couple of very short paragraphs.   Under "Types of rheumatoid arthritis", only JRA is discussed.  Under DMARDS there is really no information other than the very most basic.  This on methotrexate:

Methotrexate is the most commonly used, and least toxic, of the immunosuppressants. It is taken by mouth.

I won't bother to post all in which I was disappointed, but will only say - don't bother!

Waddie, I think they are just getting up and running, thats why they have asked for suggestions to see what we would like added. what they have for now I think is good to start. I looked them up as they are UK based, the site is in early days and is written by sufferers, they are the voice of the site,  so by pointing out what else they could add will encourage them to add more. Its sad to not bother to post at all, as they are like us, in the same position , maybe not knowing a lot at first.

I think we should all give out what info we have learnt along the way. [QUOTE=Mrs Pincushion]Its a very good and informative site, thank you. What I like about the site, it is not full of medical jargon that the everyday person hasnt heard before. [/QUOTE]

I agree, it is not full of medical Jargon; it isn't full of much anything...it is missing key information.

 So Pincushion,  how you give it a "Very Good AND Informative" rating is beyond me.

 I will say it is a good lay out..I was able to navigate the site...way easier than the new site I visited last night...It was anything but user friendly...so by saying that...I thank you for sharing your site and wish you luck on building it to be successful.
Belinda, I am sorry I was so harsh!  I only saw you asked for link suggestions and plowed on with my "review".   Waddie,
Don't you feel bad...you were right in your observation. You were not harsh and I think they can be helped by your critique.
Hi Everyone

Thanks for your feedback

Yes it is a work in progress and we will be updating a regular intervals.

We also would like to make up for deficiencies in the site by as I say getting links to others. So any help will be much appreciated

Rgds

BelindaBelinda your site isn't even close to be ready for the public yet.   To have the diagnosis area not mention the diagnostic criterea is not good.   Blood tests don't include the anti ccp test.   Your links include a link to the main arthritis insight page...a site that hasn't been updated in YEARS (since KJ and Kimmie sold it).  A site that is aimed at people with arthritis that includes as much clicking as yours does shows that you all are unaware of the effects of the disease. I dont think it should be pulled at all, it should be improved, maybe add that the site is in construction...well done and keep on going until you have it 100% <>

I have RA, so was curious about this website.  I didn't look at any of the info on it, so cannot evaulate it, however, I think part of its purpose is to gather info from RA people for marketing purposes.  Just something to keep in mind when using or participate on this site.

I've been mischaracterized as a troublemaker by some, and as a result I seldom post here, but my intention for this post is simply to share my view of this new website.  Ignore if you wish.

From their  "About Us" page:

The Patients Voice is one of the many patient-focused services from Healthcare Landscape.

Healthcare Landscape is a medical market research company, which conducts surveys with all the different people involved in the healthcare process. These range from patients and their carers, to medical professionals such as nurses, pharmacists, physicians and academics. Our mission is to discover what they think and what their experiences have been.

Healthcare Landscape, formerly known as The Patient Connection, is an independent fieldwork agency which operates exclusively in the healthcare and medical market research sectors.

If you are a market research agency, Healthcare Landscape is your gateway to unmatched fieldwork services across the world. Click on Client Area to find out what services we offer.

If you are a patient or a medical professional, click below on Patient Area or on Physician & Healthcare Professional Area to join our unique healthcare communities.

http://www.healthcarelandscape.com/

From the Patients Voice membership registration page:

Join the patient forum where you are invited to participate in medical market research and share your opinions about many medical topics with people who really want to know what you think.

Before you take the opportunity of carrying out your first study we need to know a bit more about you so that you are invited to participate in relevant studies. This should only take about three minutes of your valuable time.

All your responses will be completely anonymous and in strict confidence.

The Patients Voice studies are conducted in accordance with both European Society of Opinion and Marketing Research (ESOMAR) and the Market Research Society (MRS) Codes of Conduct.  You will NEVER be contacted by us or anybody who is affiliated with us for sales.

Medical market research and peoples opinions are the gateway to improve our healthcare system. 

So Join today to become part of this unique pioneering patient research community.

Joie2010-02-05 12:31:36Belinda, Sam12342010-02-05 12:39:12Thanks Sam

In fact both The Patients Voice and The Patients' Voice and indeed The Patient's Voice can be correct in different settings but thanks for pointing this out to us

The object is to provide an information resource and at the same time make patients and caregivers aware of the value of research.Thanks for the comment

yes we are a research group. Strictly speaking there is a difference between research and marketing proper as it is not our purpose to sell people things.

Indeed we are forbidden to do so.

Our role is to provide our clients with the opinions of different "stakeholder" groups around them

"Strictly speaking there is a difference between research and marketing proper as it is not our purpose to sell people things."

But you do  'sell people things', right?  Otherwise you wouldn't be in business.

Joie, thank you so much for going to the trouble to post your information on this spammer, oh, I mean market researcher.  I am glad you spotted that and let us know!  [QUOTE=BelindaShale]

yes we are a research group. Strictly speaking there is a difference between research and marketing proper as it is not our purpose to sell people things.

Indeed we are forbidden to do so.

Our role is to provide our clients with the opinions of different "stakeholder" groups around them

[/QUOTE]

You may not be selling anything to people, but your group is selling "data" from people that visit your website and conduct surveys/research from the pool of people that visit your website looking for RA related info. 

As long as you are upfront about that, disclose that, than your viewers are aware and have the option to participate or not.

Thanks Waddie -- hope u are doing well.  Take care.

 

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