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
Reply # - July 31, 2012, 02:29 AM
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.
Reply # - July 31, 2012, 05:54 PM
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