Probably a non-obvious reason. We implemented the Help Line a few months ago and wanted to start slow before promoting it strongly, just to be sure the bugs were worked out.
Then it was a matter of bandwidth–not enough staff time to get everything done. I know it seems simple, but we had some staff transition, etc., etc.
I recently hired a a great new person–Shelby–who is trained as a health educator. She has been swamped with our grant process for the past month, but is now digging out and trying to improve everything we do related to patient education. (It was her idea to ask people about have one or two topical chat sessions a month. I thought it would be a good idea to get a leading researcher on to interact with patients, or an expert on lymphedema, or someone who has gone through IL-2, etc. Shelby's view was that before we roll out a program we should first get feedback.)
One of the many items on Shelby's "to do" list is to find a way of promoting the Help Line better. We announced it in the print newsletter this spring, and for about a month promoted it in a text box at the of all our letters going out. But today when I replied to your post I had trouble even finding it on our web site. That's not acceptable.
Shelby has bumped up the profile a bit, but we have more work to do.
One thing I hope to implement soon is a screening tool for clinical trials. The tool would allow people to input information about their diagnosis and treatment to date, then would provide a personalized list of active trials for which they are eligible.
We envision having this on the left side of the bulletin board screen, and I am thinking we should put in the Help Line number there as well.
Please keep the suggestions coming. We won't be able to implement everything, but will do as much as time and money allow.
Tim–MRF
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