Are you able to contact your specialist via em... - CLL Support

CLL Support

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Are you able to contact your specialist via email or Facebook?


A new study published online June 24 in the Journal of General Internal Medicine, found that "Thirty-seven percent of participants said they'd e-mailed their doctor in the past six months, and 18% had reached out through Facebook. Those most likely to reach out to their doctor electronically were non-whites, people younger than 45, and those with higher incomes. Caregivers and patients with chronic illnesses were also more likely to use e-mail or Facebook to communicate with their doctor.

People with less education and lower incomes were less likely to reach out to their doctor online. Accessing health information electronically is also preferred, the survey results revealed. Up to 57% of respondents reported wanting to use their doctors' websites for this purpose. About 46% also wanted to track their health progress or access health information through e-mail."

Do you have email contact with any of your medical team or are you able to access your health information electronically? Would you like to do so? My haematologist has supported me with email contact for many years and that has been much appreciated when I've needed urgent specialist advice. I also provide my haematologist with an updated plot of my important blood count information prior to my appointments. I find that helps us make more effective use of the limited consult time, but I'm also aware that this is a privilege extended by my specialist which is not billed, so I'm careful to respect that privilege.

Australia is slowly introducing an eHealth system which I joined several years ago, but I'm still waiting for it to be of any use to me.


10 Replies

In the U.S., Obamacare provided funds for medical practices to establish EHR (Electronic Health Records), and with that now often comes patient portals of varying quality from a shark-filled marketplace.

This is completely new territory for some older practices, and I detect begrudging acceptance of it in a few of my specialists. A few doctors actually seem to hope it will fail, while insisting on the freedom of the marketplace in other respects:

Others would prefer that I use their portal even to make appointments that once required a phone call. I can even access visit summaries and lab results online, and of course, make payments.

Poorly designed EHR systems will last far too long in the U.S., I'm afraid. Medical practices in the U.S. are profit driven, and hold on to old tech much longer than most industries, in my experience. As recently as 5 years ago, I still saw MS-DOS based patient billing systems. I recently helped diagnose a Windows 2000 based instrument for one of my specialists (bad monitor cable). Thankfully, it was not a network based instrument.

This is why the EHR aspect Obamacare is such a potential leap forward, but may stumble for a few practices that bought a package with a view only at the bottom line cost.

On the heels of portals and EHR are virtual office visits. Most doctors don't seem yet ready for video appointments, but the younger generation would seem to welcome it:

I really think it depends on the specialty, and the nature of the visit. Palpating (feeling) lymph nodes will remain an office visit until some sort of future robotic society, I think.

Hi I have both emailed and phoned my specialist. I have found both very helpful at times. Best wishes

Hi, I have communicated with my specialist mainly through text to ask a quick question. If necessary he has phoned back but generally a quick reply was adequate. Like you Neil, I am conscious that I am one of many patients so have tried to only do so in when necessary.

I am new to the site but I have found it to be very informative. I am amazed at the wealth of knowledge people so generously share. I wish I had been aware of it when I was first diagnosed. Like many others I felt as I had been hit by a bus when my GP

very clumsily informed me of the diagnosis. However, I am glad to say, I slowly learnt more about the disease and realised that there is life after a diagnosis. I also changed specialists and am now a patient of Dr Con Tam so I know I am well looked after.

Thank you all for a wonderful resource


I've only emailed my specialists a few times over the past 3 and half years and then only to give them salient info prior to a consult, like you Neil in order to make the most of my time with them. Emails have always centred around trials or treatment decisions and I've left the abstract stuff for the face to face time. They've always been very kind in either replying to me or dealing with my emails at the consults. I think I have a pretty special team of Drs on my side.

I have emailed my specialist (or a registrar working for her) on several occasions. This has included exchange of blood results / advice on next step as I was coming off steroids (before splenectomy) and so I did not need to go into hospital for consultations. I found it an excellent way of communicating.

At my last appointment (about a month ago), a new role appeared - that of a CLL-specialist Nurse Practioner (she works 3 days a week). Her role is new and is to act as a patient champion/advisor outside formal appointments. I think it is an excellent idea and I have already used her (so far all by email)! I found out from this forum last week that I should have has a flow cytometry as part of my had mentioned this before, but she has checked, said I did have one and is now sending me the letter on this that I never got. She is happy to chat by phone to answer questions.

Personally, even though I live near the hospital, I find the electronic access to CLL consultant/nurse very convenient and I am sure it saves time for the medics and myself. So I am a strong advocate of long as the medics are up for it (like my spleen surgeon was not, so that made it very frustrating.....)

I email (& prefer it most of the time) both the oncologist and the oncologist NP; both are only PT for CLL (not sure what they do otherwise, I think the Oncologist teaches?) Anyway, again mostly for blood test results because I get my tests done about at a different lab than they work at so this lab faxes it to them.

If i have a question I will email them too...One of them usually gets back to me within a couple days.

Hi Aussie Neil, I use email to contact my Dr.. The system includes making , cancelling, remembering scheduled appts. All test results like labs, not a surgical or radiology reports plus a whole lot more topics. Makes it very easy to keep up with info and keep it stored for review.

Couldn't find the edit button to also say your picture is glorious, Looks like God would show himself thru gold if he didn't want to use the radio tower heehee. Just magnificent , well done

AussieNeilAdministrator in reply to buckinhard

Good to hear that your doctor makes everything so convenient for you via email. Probably easier to find than posted information too.

Glad you appreciated my photo. You can find Edit by clicking on the 'v' to the right of the 'Like (0)' under your post or reply.


Hi, I just was cleaning out old emails and came to this one you wrote awhile back. I don't get on my computer as often as I used to and have missed many important ones like yours!! so sorry !! I found the "v" thanks !

Hoo roo

p.s. I told my husband Dan you sign off with "hoo roo"......just now when he walked out of the study he said "hoo roo", too cute!

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