Any SoMe topics of interest to you for Mayo conference?

• By yarnkitty
• Reply 3438119
• October 7, 2012 at 9:08 am
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I think having the ability to email a question to the doctor and get an actual answer could really be beneficial. What usually happens is you call, talk to a nurse, they talk to the doctor, they call back, the answer is not really what you needed or there are further questions the nurse cannot answer. It's like that old game Telephone where you whisper a message around the circle and laugh at the garbled stuff that comes out the other end. They could also use their practice website to post answers to frequently asked questions.

• By Laura_K
• Reply 3438223 · In reply to 3438119 by yarnkitty
• October 7, 2012 at 9:57 am
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The website for FAQ's is a good answer for doctors in specialties. I keep wondering where the medical side is supposed to get the resources (people to build websites, blogs, etc) and especially the time to do these things. The lack of both may explain the popularity of Twitter with some docs - it doesn't take much time to do a 144 character message.

I'll stay tuned to any talk that includes your question - I agree completely about the frustration of playing the telephone game.

be well,
Laura

• By ShantiHeart
• Reply 3439902
• October 7, 2012 at 11:26 pm
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Laura, I am fortunate in that two of the doctors I see - my cardiologist and my primary care physician (who is an integrative medicine MD) - are part of the Ohio State University system, so have "mychart" - the software that lets patients see records and test results that their docs post as well as email their doctors/doctors offices. I have been able to ask questions of both of these doctors via this system and get direct answers from them, usually pretty quick turnaround. I also use this feature to follow up on things discussed in my office visits, if I don't hear from them re tests etc in the time estimated during the office visit. I am careful not to email too much or make my emails too long, and to stay on topic. I would encourage the medical people there that the adjustment to and cost of such systems is really worth it. It's so much more convenient for a doctor's office to deal with one's questions/requests via email than answer all the phone calls, that I don't know why they resist going this route. And I am more dedicated to staying with these two doctors in part because I have this option.

Another point is that both these doctors are happy to have me bring up things I've read online about my conditions. They don't look down their noses at medical journal articles and other resources, from credible sites mind you, that I may bring in or send links to. Re SCAD, my cardiologist says, "You are the expert about SCAD in this partnership as much as I am, due to all your research and your network of SCAD survivors. We are in this together, figuring out what the best treatment options are for you, etc." That is very empowering to me, to know my input is valued.

So, hope this is helpful and thank you for inviting our input! ShantiHeart/Lynda

• By Laura_K
• Reply 3440237 · In reply to 3439902 by ShantiHeart
• October 8, 2012 at 6:45 am
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Lynda, I am also a Buckeye who uses OSU's great med system. I have a local cardio, but travel to Gahanna for the OSU MS Clinic expertise. Unfortunately the MS doc doesn't use his email, he says it is too easy for patients to misunderstand the information he is trying to convey in a brief email. I can see both sides and we compromised that I have his cell # and can text/email to that account when I have something to ask.

Thanks for taking the time to share you experiences - I will add them to my 'watch' list.

be well,
Laura

• By Chee
• Reply 3440619
• October 8, 2012 at 9:48 am
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Hi, I'm new to the SCAD world (9/13/12) and have been reading a lot online lately. I also use My Chart and it prompts me to ask questions and learn more about my condition, treatment, etc. (although online info is limited in academic info but rich in patient experience, I understand why). I've recently been referred to as an "informed patient" because of access to my info and have better discussions with my doctors. It's important to me to be an active participant in my treatment and bringing up new considerations for my doc to look into is...awesome! Very similar to what ShantiHeart conveyed. I can see how from a doctor's perspective, a patient may take e-communication out of context but for me having access to my info online is so beneficial. I am also very impressed and excited there is an online community for SCAD survivors. I am signing up for the Mayo Clinic study. I guess, I would wonder if there is a SoMe format for doctors/providers re: SCAD. I'm in rural Maine and we don't pretend to know a lot about this and may be referred to Boston if there are additional concerns/second opinion, etc. Enjoy attending the conference, that's an amazing opportunity! Thank you. C

• By Laura_K
• Reply 3443139 · In reply to 3440619 by Chee
• October 9, 2012 at 6:54 am
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There is a lot of SCAD activity going on through Mayo, from what I understand. The SCAD group here might be able to give you their contacts' information - be sure to use them. The support of the women here is wonderful and healing - I'm sorry about your SCAD episode but am so happy you are still with us. Be sure to reach out for help and support.

my heartfelt best,
Laura