From the BBC: ‘Personal’ health websites sought

People searching online for health advice often reject sites giving high quality information in favour of those with a human touch, a study suggests.

Researchers found people use an initial weeding out process to deal with the minefield of health information of variable quality available.

However, this tends to mean they quickly eliminate most NHS and drug company websites, they said.

The study was funded by the UK’s Economic and Social Research Council.

People don’t have the patience to scroll through pages in order to find something useful
Professor Pamela Briggs
Northumbria University
The researchers examined the internet search strategies of people who wanted to find specific health information on topics such as high blood pressure, the menopause and hormone replacement therapy (HRT).

They found that many websites were dismissed at quite amazing speeds.

Lead researcher Professor Pamela Briggs, from Northumbria University, said: “One thing that really put people off was advertising, so people clicked off drug company websites straight away.

“Generally, the medical information on drug company sites is very accurate but people question the authors’ motivation and agenda.

“The issue of impartiality is quite crucial in building trust.”

Personal stories

NHS websites fared little better. Often these were rejected because the first page participants were directed to was a portal or they had too much background or generic content.

Professor Briggs said: “People don’t have the patience to scroll through pages in order to find something useful.

“Ease of access is so important.”

The research also found that even if a site made a favourable first impression, it was unlikely to keep the attention if it did not include personal stories to which the reader could relate.

Many were specifically drawn to sites where they could read about the experiences of other people who have the same problems and concerns.

But Professor Briggs warned that the tendency to trust sites with personal testimonies from like-minded peers was potentially flawed, as it could reinforce unhealthy behaviour patterns.

Dr Paul Cundy, a GP and member of the British Medical Association’s IT committee, said there was also a danger that personal testimonies were planted by drugs companies.

He said drugs companies had been known to sponsor self-help sites which appeared at first glance to be independent.

“People should be encouraged to gather information from the web, but they should then take it to a doctor to discuss face-to-face rather than immediately taking action based on what they have found,” he said.

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/6422157.stm

Published: 2007/03/07 00:13:29 GMT

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Miscellaneous

I just finished watching Gallipoli, with Mel Gibson (from 1981). That movie makes me think of Chris Hollyer. Each year, on ANZAC day, he would write to the list about the meaning of the day to people in Australia and New Zealand. We’ll have to maintain the tradition for him.

If you’re interested in reading health news, and would like one place to go to get the headlines and discuss the news, try http://digged.healthblogs.org/. I’m sort of addicted to news, so I hang out there a lot now. If you know of any good RSS newsfeeds for health, let me know.

Does anyone know what the lifetime limit is for Doxil? That’s something I need to look up and stay aware of. I looked at my chart last week, and thought I saw that I’m getting 65 mg/m2. The usual dose for this regimen is 30. I need to see the doctor and make sure. I could have misread something!

Quick update

I just got off the phone with the nurse at my oncologist’s office and got some good lab results. She read off everything, but I didn’t have a pen and paper. I just remember the immunoglobulins, so here goes:

IgA 964 mg/dL
IgG 316
IgM 23

I think she said my 2 m-spikes added up to something like 0.4 g/dL. I’ll be there Tuesday to start another cycle of Velcade and Doxil, so I’ll get a copy of the report then. Last month, my IgA was in the 1300s. Before I started, it was in th 2200s. 964 is good! Maybe another cycle will get me into the normal range, which is a place I haven’t been since my diagnosis. A remission would be nice.

Last week off

I had last week off treatment, which was nice. This week I just had Zometa, which I learned from others never to have on the same day as Velcade. They reported severe flu-like symptoms, which I want to avoid! I had blood drawn today, and can call on Thursday or Friday to find out what my m-spike and IgA are. We’re expecting it to be lower than last time. I haven’t had the standard 21 day cycles of Velcade and Doxil. My doctor is doing it in 28 day cycles. I don’t mind. I only hope it’s as effective. The hives I got after the last injection are still here, so I’m going to take Eric’s advice and have IV benedryl and decadron next time. That’ll be Tuesday.

They look like mosquito bites

Yesterday when I woke up I had what looked like a couple dozen mosquito bites on my torso. They don’t hurt or itch. They’re just there. The same today, too. I think there might be a few more. I didn’t count them yesterday, so I don’t know for sure. I guessed that they might be from chemo. I finished a round of Velcade + Doxil Friday. Since they don’t hurt or itch, are visible to the public or bother me in any way, I’ll see if they’re still there tomorrow. If they are, I’ll call the doctor. I don’t think they’re anything to be alarmed about.

Velcade and Doxil Side Effects

Here’s some advice I got about Velcade/Doxil from one of the researchers involved in early trials. I thought I’d pass it on.

Myeloma treatment with DoxilWith the Velcade and Doxil, have they started you on oral Vit B6? When we used to run the Phase I study of that combination, we have recommended pyridoxine (Vit B6) 200 mg by mouth daily. I think this is even over the counter but you can definitely let your local doctor be aware that you are taking this. This drug is to prevent the hand-foot syndrome which is a potential side-effect of the Doxil.

There is also the risk of neuropathy with Velcade. A patient once told me that the Velcade neuropathy (which is more of pain) is different than the Thalidomide/Revlimid neuropathy (which is more of the numbness and tingling sensation). As of this time, there is no approved treatment for neuropathy or formal studies comparing all the drugs that are being used to alleviate neuropathy. We have been using either Neurontin or Lidocaine patch.