Value in an "information prescription"? - 1246136

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Dr West
Value in an "information prescription"? - 1246136

For those of you who don't see the home page often, I just wanted to let folks know that I wrote a relatively brief post on the concept of an "information prescription" and would welcome people's thoughts on some of the questions posed there:

1) Have people found great websites or applications to help them? Whether it’s an online community, a repository of reliable cancer information, or computer/smart phone application, I’d love to learn what people are using that has proven helpful. I suspect other people would too.

2) Any thoughts on what would be most helpful, if it isn’t out there? It’d be pretty easy to do a mobile glossary of cancer terms, and ideally an easy to use, mobile version of the GRACE content, but there’s surely plenty more…

3) What if a doctor had made a collection of 2-5 minute videos about common issues, such as a version of our FAQs? Would you be put off by them handing you a “prescription” for these as quick answers to common questions, or does a video/handout/web page put you off as less than a personal interaction?

If people can share their insights as a comment after the post, or here, that'd be very welcome.

Thanks,
Dr. West

certain spring
Reply To: Value in an "information prescription"?

1) I agree with Andy (in Comments) that GRACE is the best thing there is. Without question. The research briefings are outstanding, and the accumulation of patient experiences invaluable.
I sometimes use the Cancer Research website, www.cancerresearch.org.uk, because it has good descriptive summaries of different drugs and treatments, and is UK-based. I use clinicaltrials.gov, and that is pretty much it. On dx I was given various Macmillan (UK non-profit with network of specialist cancer nurses) booklets, of which the one on radiotherapy proved particularly useful. They are informatively but tactfully written.
2) As Mark knows, I am a middle-aged dinosaur, so I wouldn't use a mobile version of GRACE. There is a time and a place for everything, and there's something so private about cancer that I wouldn't want to be reading about it on the bus or in the street. I am conscious that lots of people out there are informing themselves via Twitter and so forth, but that wouldn't suit me at all.
3) I like the GRACE FAQs a lot (I think there should be more of them and they should be more prominent on the site - no one ever seems to know that they're there). I'm not so keen on videos where you end up being distracted by the doctor's accent/hair/personality, and which can be slow to load. There's also the issue of how the information is pitched, and the production values. When I was I put on Tarceva, the nurse specialist gave me a Roche DVD that was embarrassingly bad and an insult to the intelligence. I do however occasionally use the Roche website information on Tarceva.
I have another point, not about the accessibility of information but about its level of complexity. However I am getting near my word limit so will stop for now.

Dr West
Reply To: Value in an "information prescription"?

I'm interested in your follow up on complexity/accessibility.

You're very right about the FAQs. I think of ideas for more FAQs, then finish the sentence I'm typing, and then forget about the FAQ. We need to pool ideas.

-Dr. West

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Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education