As recently as the mid-80s, some medical text books suggested that “writing lists” to share with their doctor was a symptom of a patient emotional disorder.

Like the “soup Nazi” on Seinfeld, I will never be caught dead bringing a list of questions into my doctor. – Just kidding.

no questions… lists saves lives… I use them daily in the OR and in the office. If patients understand how physicians think through a problem and how the questions will come to them (format, etc) they will be better prepared, less apprehensive and they will help ME, help YOU! Lists have the ability to transform the delivery of care and the safety profile and quality of the care delivered.

http://bit.ly/d1gLPG

http://bit.ly/1shGP

I know you hate if I re-post things on Twitter :-) even if by accident :-( but revisiting these from time to time will prove useful to many patients…. since everyday new patients are *borne*. This info must *live* in an environment where it is easily recirculated to those who might find it beneficial.
Cheers
howard

For example, many patients with Parkinson’s have complex medications that require careful titration in order to maximize the benefit. Talking about medication can dominate a clinical encounter, however constipation, which is both a symptom of PD and a side effect of some medications, can cause dangerous complications and waiting until it becomes the urgent complaint could be too late. Sexual dysfunction can strain the patient-caregiver relationship from both sides, but is rarely the reason for an office visit. Your physician may be too rushed or distracted by your primary complaints to remember to bring these up. A patient checklist can be invaluable in optimizing the use of a patient’s brief time with the physician.

Care today is more complicated, effective, and wasteful then it ever has been in history, all at the same time. (Pre-1900, care did very little, but it was pretty cheap.) We need everyone participating to make it work.

That sounds very useful… I will watch/listen for it. I will be interested to see how you structure it, how you define communities, how you get the word out, etc — good luck!

- Lygeia

There’s a lot to be said for independent voices. That’s why it’s so important for work like ours to be funded by donations and foundations as much as possible. (That’s part of why I’m so glad to see RWJF on this thread.)

A great, useful, empowering, free, quality-improving, problem-avoiding e-patient resource, developed and provided by our government. Now THAT’s a great use of “your taxes at work.”

You raise an excellent point: “join online communities that can help support you as a patient. Obviously this latter approach is an attractive one, provided you know of such a community. (One challenge, though, is finding the right community when you need it–I will take a better look.) ”

I am now actively working to help build such a centralized resource about medical online communities. It is an important component to help people find the right information about their medical issues and should help federate the large numbers of people who are already practicing some aspects of participatory medicine without even knowing anything about it.

Think you’re being too progressive? This refrigerator magnet carries a quote from 1946 – the first words of Benjamin Spock’s baby book:

If you can’t ask for what you want, you can’t be Engaged (E #2) in care. That’s especially important on a safety concern for the patient, young old or yourself. Having such a concern, and resolving it, is the essence of being a responsible partner.

Don’t fall prey to any real or imagined arrogance. During my illness I wrote to my oncologist with a major question – reading a radiology report it looked like one of my tumors had grown 30% in two weeks. I emailed my oncologist, Dr. David McDermott – one of the best in the world for my disease! – and he explained that I was mixing up x, y, and z dimensions. (I didn’t understand the word “craniocaudal,” the “spine” direction.) I apologized for taking his time and you know what he said? “I am happy to field your questions.”

Is there any reason on earth to expect less from any (ahem) care provider?

Note that I didn’t say “Be obnoxious.” I’m not obnoxious to my clinicians. Obnoxious is only appropriate when somebody’s refusing to do their job, e.g. in Alan Viars’s story of his father’s medical records fiasco, when employees refused to honor the law.

Expressing a concern to your provider is responsible, not obnoxious. I’m sure they’ll understand.

Both of your raise good points.

You’re right, Dave — I really shouldn’t think of a phone call (or any communication) as “bothering” the MD. And my intention would be to keep the phone call short.

While I blame the system more than any individual, I am reacting to a perceived sense I have gotten that I’m meddling if I try to engage too much. There are a couple of ways to address this issue, including: pick your healthcare providers carefully (when possible–which it’s not, always), forge ahead and ask your questions anyway (if the Dr seems brusque or displeased, get over it–you need to meet your own needs and improve the system), join online communities that can help support you as a patient. Obviously this latter approach is an attractive one, provided you know of such a community. (One challenge, though, is finding the right community when you need it–I will take a better look.) Thanks!

Back to the birds’ eye perspective — a patient checklist should include something to help patients navigate their health in between MD encounters — part of which should be via finding relevant communities.

this is a classic example of a situation where an online community of informed e-patients should be able to help you by providing the feedback you need almost on the spot. Based on your email there is really no reason the physician should be the one answering the question, particularly if the treatment is standard and the medical problem well understood.

Doctors are overwhelmed and there is no reason why, in the age of the vastly increased public access to medical information, communities of patients and caregivers can’t help alleviate the problem.

You’ve just provided another reason why participatory medicine is centered around the networked patients.

Great real-world example.

May I ask for a moment of self-reflection? What has you think of it in terms of “bothering” the physician?

It’s great that you said “lengthy phone call.” Dr. Danny Sands’ 1999 guidelines for doc-pt email advised keeping it short. Same for phone calls, I think.

In my view you have EVERY right ask for what you need as a customer of this provider. I’m just as sure you wouldn’t have picked a disempowering one, so I’d just call and say “I have an important question that I want to discuss with the doctor. What’s the best way? S/he’s welcome to email me or call. I’ll be as brief as possible, for both our sakes.”