Healclick.com – a new way of looking at your health

January 14, 2014 at 5:41 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
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There’s a new website launching at 8 am Pacific Time (whatever that is!) and it sounds like (and in fact looks like, as I’ve been playing in the beta sandbox) an interesting idea.

It’s completely free to join and there will be no ads. (How’s it funded? Read on!) It’s designed by patients for patients and the idea it’s kind of social media for patients with a twist. You fill in all your details including your health issues, medications etc. and you can discuss topics, write about anything you want that’s treatment/patient etc. related and read what other people are saying. The twist is that you can look at other registered people (you can find me on there as Pollyanna Penguin) and the site will give you a percentage match to other people on the site, based on your conditions, treatments etc.

So OK, how’s it funded? Well anonymised and grouped data will be sold to research organisations – both pharma and universities. There’s some info on how it will be anonymised  http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/De-identification/guidance.html This may or may not be something you feel comfortable with – it sounds fine to me (but then I’m using Pollyanna Penguin on there!) but I’m sure some people wouldn’t be happy with it; well that’s entirely your decision – no pressure! :-)

If you want to give it a go though, here’s where to find it: www.HealClick.com, or if you’d like a little more info, have a look here: www.indiegogo.com/projects/revolutionizing-patient-sharing or here:

 http://blog.healclick.com/uncategorized/we-got-answers

or Wren over at rheumablog also has a post about it – she’s joined too.

I’ve already had someone link to me – presumably we’re a match – or perhaps it’s someone that reads the blog, or maybe both. Frustratingly I can’t find out right now as I’ve stupidly lost my password! Because it’s still in beta, someone’s got to sort this out for me manually, but I’m sure once it’s live it’ll be as easy as any other site when you lose your password (which I blush to admit I do all the time!) Anyway, I’m excited to find out and I’ll be watching the site with interest to see how it develops. See you there?

Oops! Pill trays are NOT infallible!

October 7, 2009 at 6:44 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, Me, rheumatoid arthritis (RA) | 4 Comments
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I wondered why I was feeling so peculiar this morning … put it down to the fact that hubby and I both slept terribly last night, as did half of Norfolk if hubby’s patients’ comments are anything to go by. Now I wonder if it was more than that.

When I got home this evening I went to take my evening pills (augmented at the moment with antibiotics for the lump doing Vesuvius impressions on my arm) and found it empty.

I then had a vague memory of taking my pills after breakfast this morning and thinking, ‘Odd that I forgot to take them before breakfast as I usually do!’

You guessed it – I didn’t forget to take them before breakfast. I had my evening pills about twenty minutes after my morning pills.

I think I should probably be panicking and phoning NHS Direct and stuff, but given that that was now nearly 12 hours ago and I’m still sitting here writing this, I figure there’s probably no need. Luckily the only apparent ‘side effects’ were the desire to eat a horse (not literally of course, although who knows what went into the pasty I ended up having, most unhealthily, for lunch) and a feeling of general wooziness which may have had nothing to do with it given that a) I did have a lousy night and b) I’ve been feeling dopey all week!

It went well!!

August 17, 2009 at 4:34 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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Well … I saw the rheumy nurse on Friday … and thankfully it was NOT the same one that I’ve seen in the past, and this one was a) human b) non-patronising c) cheerful and, perhaps most importantly, d) helpful! OK, so she read the doctor’s notes all wrong to start with and got in a bit of a muddle, but I’ll forgive her that given the points above! Although, as suspected, having an appointment in August was a bit of a waste of time in a way, at least this nurse says definitely now she’s met me she’s happy for me to phone in September and say if I feel the MTX needs increasing, in which case she will increase it.

Interestingly this nurse is someone that one of my friends has seen in the past and thought was awful … obviously a personality clash, just like the one I had with the previous nurse I saw. At least I’ve been lucky enough to change.

We also discussed this whole three months/ six months between appointments thing and although the news wasn’t good, at least she was frank about it. What it boils down to is they’re underfunded and under-staffed and while they’d love to see me every three months, it ain’t gonna happen. However, they have apparently improved the helpline (hoorah for that as it was rubbish when I used it last!)

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