Monday, February 25, 2013

What ePatients Want Their Healthcare Providers to Know

In an earlier post, I asked my readers to respond to these questions:

  • Do you consider yourself an ePatient? 
  • If you were given an opportunity to help educate health care providers on this topic, what would YOU want your future nurses and doctors to know?

The responses that I received have been thoughtful, informed, and the result of positive interactions with others. In other words, my awesome readers exemplify the definition of an ePatient: Patients who are educated, empowered, equipped, and engaged in their care.

This response from reader Kate summed up what several email and comments conveyed:

1) Realize that people looking things up on the internet is the new normal.
What you must try to do as a care provider is distinguish between someone who has decided he has a rare disease based on his sore throat, and the more informed patient who is trying to make sense of competing information, various treatment options and is motivated to improve her health.
How can you do that?  Use tools you already have – ask questions and observe.  “Why” questions are particularly useful: “Why do you think you have this rare disease?” and followup questions “What are your symptoms, and how long have you had them?”
If the answer is that Dr Oz is really worried about the disease, you can feel comfortable proceeding to a more routine analysis, but if the answer has details about other tests that have been performed, or diagnosis that have been ruled out, then the patient is probably an engaged patient.
“Why do you think this drug make sense for you?” Again the answer helps you understand the though process, or the journey, that the patient has taken.
You have to use the power of detection that you use to help patients every day to figure out what is going on here. Ask directly if they have any ongoing health problems – people with recurring or chronic illnesses often have done a great deal information about the disease. 
2) Realize that the vast amount of conflicting medical advice in the media is very confusing to patients.
For example, just think about dietary advice – eat lots of carbs and whole grains, or wheat is bad for you so go gluten free.  Don’t eat meat, or eat high quality proteins, etc.
Sometimes when a patient is bringing you information from the internet, it’s because he is overwhelmed by the variety of advice out there. Be kind and helpful in giving your advice, and try to give a reason for why it’s the best choice for them. 
3) Realize that having drug side-effects online is terrifying.
That information was always on the drug packaging, but now that it’s in a font that is readable, it WILL scare the bejesus out people. You need to be able to help people understand the difference between the common side effects and the very rare ones.  And when they should call you if something doesn’t seem right. 
4) Be ready to listen, be open to new ideas.
When dealing patients that have recurring or chronic problems, understand that they may know their own bodies very well.  They may be able to detect the onset of an ear infection or a lupus flare before it can be detected clinically.
They may also be aware of newly approved treatments, or treatments in trial.  This doesn’t mean that this is the right course for them, but medicine is constantly changing.
Even it you don’t think it is the right course, don’t be dismissive of the option or more importantly of them!  Give your reason for your proposed course of treatment – “This works well for about 95% of the people with your condition, and it’s quite a bit cheaper. Let’s start with that, and look at other options if this doesn’t work.” 
5) Use the Internet to assist you.
 If you’re in a speciality, find sites with support groups for the problems you often treat, or organizations related to the disease: i.e Sjogren’s World and the Sjogrens Syndrome Foundation.  Your patients need not only your help, but support in dealing with their issues. I find a great resource for overviews of heath conditions, broken down into information about a problem’s symptoms, diagnostic process and treatment. Use the internet to supplement your limited time by providing good resources to interested patients.

Thank you to everyone for providing such great quality input! I'm looking forward to including your suggestions to my panel presentation.

If you think of more -- keep 'em coming!


Jenny O. said...

Hi, Mom! (This is the DIL for regular followers out there.)

I love every one of these points, and I'd like to expand on #4. I don't believe that most people consider depression a chronic illness, and it certainly isn't autoimmune by any means, but as far as I'm concerned, I expect to deal with it for the rest of my life just as I have for the past 10 years. And from a patient--and ePatient--perspective, that's a big deal.

When it comes to prescribing psychologists, I've found that the best relationship for me is a 50/50 division of input. I always acknowledge that the doctor in the room has education and access to information I will never have; that's why I'm there in the first place. He or she will know the best, most common course of action. "Be ready to listen, be open to new ideas," though, is key, because--as other followers pointed out--we patients know our bodies and our responses to medications. We are experts in ourselves, something our doctors cannot ever be. I know what medications have worked for me in the past and what hasn't, and I know that as I've gotten older, my response to different medications has changed. (For example, I tend to need smaller dosages than "average," whether with aspirin or anti-depressants.) Between the two of us, along with a REAL conversation in which we are both engaged, we find a solution. I do tend to defer to my doctor's suggestions (when we have this 50/50 relationship), but only after listening and discussing alternative options.

The key for the patient in this scenario is to do the same: "Be ready to listen, be open to new ideas." Without that attitude, neither party can truly engage, and finding a workable solution becomes frustrating, painful, and even problematic.

I know that time is a big part of this, and I also know that time is money. But if every doctor took a few extra minutes for discussion, patients would be treated better and doctor's would have better responses and medical follow-throughs. Time, open-mindedness, and respect. That's all it really boils down to.

(That was much longer than I planned!)

Julia Oleinik said...

Excellent points, Jenny!