Thursday, March 8, 2012

Virtual Cancer Buddy

Hi friends,

I have been dreaming.

Actually at the urging of a forward thinking doctor friend, I have been wondering what might be in the best interest of all cancer survivors in a high tech approach to managing what is increasingly being understood as a chronic disease. That is certainly the case with CLL as the new therapies evolve.

I am envisioning something much more than a simple excel sheet that tracks labs. What I want is some kind of virtual helper that electronically nudges me to take my meds on time and do my aerobics. I don't think this is a fantasy. Hospitals are already exploring using patient portals to help manage heart failure and diabetes after discharge. Cancer care has a more distant and broader horizon, but I still think it can work.

What would you want included in this virtual cancer buddy?

Here are some thoughts I had in no particular order.

Contact info for providers?

Personal reminders of meds, exercise, appointments, lab?

A patient portal to ask questions or review labs?

Annotated interactive med lists that highlight possible risks, adverse events, and interactions?

Lab flow sheets with graphs and alerts?

Vital sign flow sheets?

Diet and exercise charts and advice?

Stress reduction techniques?

Glossary of terms?

Information for family and other caregivers?

Help with the decision process?

"Red flags" and what to do if you have one?

A "Siri" that answers your questions?

Please email me or post your thoughts and suggestions. Do you agree with my list? What would you add or delete? Dream big. Forget being practical. What do you really want? I will organize them and present them here and to my contacts in the hospitals systems and see if I can get some traction. At least I can make sure someone is hearing us.

I have posted this identical request on CLL at ACOR and the CLL Yahoo group and got very valuable responses that I am trying to tie together, but my blog reaches different readers and I want to hear what you have to say.

We are all in this together.

Brian

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2 Comments:

Anonymous Cyn said...

Brian,
I have been following your blog for a few months, my husband is 6 months out from a MUD for relapsed CLL, he is in his early 50s, and I am a primary care doc. I don't need the medical stuff. What i struggle with is how to LIVE with uncertainty. Enjoy the moment. Not wallow in the details. Every message board I have checked is more medical, less emotional. Does that make sense? A message board for families about how to live with and despite the chronic disease?

March 9, 2012 at 2:10 AM  
Anonymous Anonymous said...

I like this idea, would be beneficial to so many. I don't have any suggestions but maybe after i think on it..Thanks Brian

Jill gcape@shaw.ca

March 9, 2012 at 8:26 AM  

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