January 2010

Q. I saw your piece on Personalized Medicine, the electronic medical records portion peaked my interest....I have the following questions about this new technology.

1. Who's going to compile this data?

Hopefully, it won't be the attending physician while you're sitting in a cold exam room and she request tests that are race specific, and the patient is multiracial.

None of this data was complied prior to an appointment, or the medical/family history they have is incomplete(race entered as Non-Black).

2. Will this data be entered in advance?
3. Will your primary doctor even read your case file?
4. Will there be a dedicated person to interview the patient?
5. Will Electronic Medical Records create new jobs?

A. Thanks for taking the time to write to me and for sharing your comprehensive and thoughtful letter to Kaiser concerning your treatment.

You ask a number of important questions. The circumstances around an EMR will be varied depending on so many factors, but in general there should be no difference in who collects and records the information - whether paper or digital. The difference is that in the future records can be stored digitally and therefore made easily available at the point of care. That said, there are many problems.

I fear that our primary care doctors will be so busy looking at their computers that they will forget to look at us and not know us as a person with a unique history and background. It sounds like that has already been your experience with Kaiser. And studies have shown that just because the information is available to the doctor, that the information still may not be viewed by the doctor.

As I said on GMA, I feel the great power of an EMR is realized when patients themselves control this information and see that every practitioner has access to the needed information. I think we are a long way from that happening. AN EMR that doesn't involve the patient or make care better serves no additional benefit many times and yet will cost us all.

My advice to you is to stay proactive when it comes to your health and continue to manage your own health information.

I can't answer your questions...but I would agree that there are benefits to having the information available in advance - and the information ACCURATELY and reliably collected by a dedicated professional.

Happy New Year to you!

Q. I'm writing to you because a friend of mine told me she saw you in "Good Morning America" and she said the case you were presented was looking exactly like mine. I was diagnosed three years ago with Raynaud's syndrome and 2 years ago with Mixed connective Tissue Disease. I've tried everything and still cannot believe I have MTD. I'm an Occupational Therapist and Graphic Designer. I know a lot about medicine and rehab... I hate drugs but I took everything that the doctors offered me promising that I will feel better... Nothing helped and I cant really use my hands.. My flexors and extensors are not working properly and I can't make a fist.. I'm loosing my strength and I can't explain to you in how much pain a live. I keep going... I don't want to be sick. 3 weeks ago I started to eat better...really healthy food and loosing a little weight and I feel a little better but I'm still not sure my diagnosis is right and I need my hands back. It's very hard for me to hug my kids (that I adore!!!) without being cautious not to get hurt, I can't tickle them, I can't be the mom I was. I can't have a good intimate moment with my husband (that I love extremely!!!) because he is afraid to hurt me or I'm too sore to move. And it's very hard for me to do my Graphic Design.... even writing this emails takes me two or three times to sit in front of the computer...PLEASE HELP ME !!!! I don't know what to do and who to trust anymore. I need to know I tried my best... you are one of my only hopes. Last week I was sent to a Neurologist that did a Nerve conduction test on me (with the needles) and I'm seeing him again next week because he said he thinks he found something... Please Dr. Savard... I beg you with all my heart to help me. I can't go on hikes with my family or sit in a movie for too long, I can't relax a moment of my life because I'm always sore but I'm trying to hide it not to make my family sad. I hope you can help me... I will appreciate it forever...

A. It sounds like you are having an incredibly difficult time functioning because of your hands. It is ironic to me that you are both an Occupational Therapist and Graphic Designer - two careers that emphasize the importance of the hands in everything we do. Who made the diagnosis of mixed connective tissue disease? Do you have a family history of autoimmune diseases? Have you been tested for scleroderma? I presume you have left no stone unturned. Have you been followed by a superb rheumatologist? who is the specialist that makes the most sense...I presume you tried symptomatic treatment for the possible Raynaud's? the calcium blocker nifedipine? it is not curative and would only help to prevent cold induced symptoms.

I wish I could be of help - it sounds as though you have been quite proactive and will leave no stone unturned until you find both the cause and an acceptable solution.