Ted Eytan

Host

A conversation, about patient self-diagnosis

Aug 29, 2013·217 visitors

Trisha Torrey

Cohost

Stage· 95 messages

Aug 29, 2013

A physician and a patient have a conversation about the value, importance, and potential challenges of self-diagnosis.

Trisha Torrey · 8:30 PM

Hi Ted - Hi Everyone... are we ready to start this self-diagnosis party?

Ted Eytan · 8:30 PM

Yes, ready!

Trisha Torrey · 8:31 PM

how are you today Ted? good day in DC?

Ted Eytan · 8:31 PM

Terrific! Yourself?

Ted Eytan · 8:32 PM

Trish, do you want to let people know why we're doing this?

Trisha Torrey · 8:33 PM

Good idea Ted...

Trisha Torrey · 8:33 PM

A few weeks ago we had a great Tweetchat with US News and World Report - but of course Twitter has its limitations

Trisha Torrey · 8:34 PM

140 characters and so many people! it went by in a flash and was tough to follow... so you and I....

Ted Eytan · 8:34 PM

...decided to try a new platform. Let's see how this goes, shall we?

Trisha Torrey · 8:35 PM

sounds good... so let's go

Ted Eytan · 8:35 PM

Why is the concept of self-diagnosis always presented in the negative? Do you think we should change that?

Trisha Torrey · 8:36 PM

aha - from YOUR perspective as a physician, I suspect that's your take. But from MY perspective as a patient - it's not a negative. Did you know that my internet research on my diagnosis saved my life?

Ted Eytan · 8:36 PM

I don't think it's a negative, and I feel it's mostly a positive. What happened with you?

Trisha Torrey · 8:37 PM

In 2004 I was diagnosed with a rare form of lymphoma and told I had only a few months to live. I was told 2 labs had independently confirmed the diagnosis based on a biopsy....

Trisha Torrey · 8:38 PM

however - I just KNEW they could not be right. So I pulled out all the stops, googling every word on the lab reports - and voila! they were wrong. I was right. I had self-diagnosed more successfully than two pathology labs.

Ted Eytan · 8:39 PM

Great example. I feel that we don't know what we're missing when we don't include the patient in determining the diagnosis.

Trisha Torrey · 8:39 PM

You know, it's very rare for any patient who is suffering from strange symptoms to see a doctor before consulting the Web.... doctors, today, are our second opinion!

Ted Eytan · 8:40 PM

Recently I shadowed a physician at Kaiser Permanente and I was impressed that he actually hoped the patient had looked up their symptoms beforehand. I thought that was really great.

Trisha Torrey · 8:41 PM

I know that most docs think we patients who hang out online are causing ourselves - and possibly them - headaches, but so far I think that the benefits have far outweighed the problems

Trisha Torrey · 8:41 PM

Ted - Why don’t doctors want us patients to self-diagnose?

Ted Eytan · 8:42 PM

You know, Trisha, I feel like if they experience it enough, they will want them to participate in the diagnosis process.

Ted Eytan · 8:42 PM

I feel in some health systems where there isn't continuity that a physician would worry that the patient wouldn't follow-up if they had a concern, so the key is to be available to the patient when they think they have a specific diagnosis.

Trisha Torrey · 8:43 PM

What docs have told me is that patients are wasting their own time AND the doctors time when they want to discuss findings that may not apply.... but it seems like just talking it through would put a patient's mind at ease

Ted Eytan · 8:44 PM

So let me ask, do you know of or have you met physicians that don't feel this way?

Trisha Torrey · 8:44 PM

which way?

Ted Eytan · 8:45 PM

Sorry let me clarify - physicians who don't feel patients are wasting their time when they self diagnose?

Trisha Torrey · 8:45 PM

I have two kinds of experiences with physicians. One is in my own life with doctors who aren't on social media or working hard to collaborate with their patients. And then there are my social media and other doctor friends who always seem so willing

Trisha Torrey · 8:46 PM

to collaborate.... a big dichotomy. We can't say "all docs do this" or "all docs do that" -

Trisha Torrey · 8:47 PM

So yes - I've met many docs who tell me they prefer patients who are engaged, look online, make suggestions, have conversations... but they aren't MY docs. I wish they were!

Ted Eytan · 8:47 PM

Sorry to hear, I feel this is changing in health systems where physicians are interacting more with patients online.

Trisha Torrey · 8:48 PM

I agree - I do think you're right. I think that docs are beginning to see that we can do this well, and right, to help ourselves and ultimately that helps them too

Ted Eytan · 8:48 PM

See, our fellow health system leaders agree with us...

Ted Eytan · 8:48 PM

★ Spotlighted from Alex Lowenthal

““Any system of care that depends solely on the personal knowledge and analytic capabilities of physicians alone cannot be trusted.” ;-)”

Trisha Torrey · 8:48 PM

Ted - Do you know of a specific time a patient did self-diagnose to his/her own detriment?

Ted Eytan · 8:49 PM

You know, I feel there is more detriment when we limit how much patients can be involved in their health care.

Ted Eytan · 8:49 PM

if we tell them to always come to the doctor, and the doctor isn't there when they are needed, what are we causing to happen as health professionals?

Trisha Torrey · 8:50 PM

so true - you can't be everywhere and frankly, we don't want you everywhere!

Trisha Torrey · 8:50 PM

so I think it's a good sense of responsibility to learn what we can, and learn to manage what we can.

Ted Eytan · 8:50 PM

But, if you're worried about your health, we want to be there for you. It's what we're here for. This is how technology can help.

Trisha Torrey · 8:51 PM

So true. That's the perfect combination. To have the info at our fingertips thru the web, and then to have (easy) access to our doctors when we need clarification or additional resources. Good teamwork

Ted Eytan · 8:51 PM

You basically confirmed that patients can be trusted with information and as partners.

Ted Eytan · 8:51 PM

Trisha Torrey · 8:52 PM

You know - I often tell docs that you've spent 20+ years learning to be a doctor, but no one ever teaches us to be smart patients.... the internet is one way we ramp up quickly. But we still need good teachers - YOU.

Ted Eytan · 8:53 PM

If you were given a self-diagnosis tool / symptom checker, and asked to use it before contacting us, would you? Or would you rather just be connected to us?

Trisha Torrey · 8:54 PM

absolutely I would! Although I do know that some are better than others. But a tool could be a great way for me to sort out what I know about my symptoms before I saw you, making our time together so much more valuable

Ted Eytan · 8:54 PM

So, you wouldn't see that as a hurdle to connecting with your physician online?

Trisha Torrey · 8:54 PM

The opposite of a hurdle - I would change docs to find out who had such a tool at hand.

Ted Eytan · 8:55 PM

that's really cool to know...glad I asked!

Trisha Torrey · 8:55 PM

How can doctors help us determine which self-diagnostic apps or programs can be truly useful to us?

Ted Eytan · 8:57 PM

This is a great dialogue - starting with - "how do you prefer to manage your health?"

Ted Eytan · 8:57 PM

It's less about the app, and more about supporting abilities I think!

Trisha Torrey · 8:58 PM

Great point. We don't all have the same capabilities nor the same interests... but providing us with a list lets us work thru them to see what works for us

Ted Eytan · 8:58 PM

It's a great thing for a doctor to assess a patient's skill in accessing info and then setting up a plan.

Ted Eytan · 8:59 PM

I like this comment from Bart...the key is collaboration!

Ted Eytan · 8:59 PM

★ Spotlighted from Bart Windrum

“Ted/Trisha: re pre-appt self diagnostic tool: I'd use it but it would need to be high quality and with a good user interface, plus ability to save and xfr/download entries, etc. You get the idea.”

Ted Eytan · 8:59 PM

What are the 2-3 things doctors need to learn or do better in the era of self diagnosis?

Trisha Torrey · 9:00 PM

first - don't be immediately dismissive - an engaged patient is a good patient!

Trisha Torrey · 9:00 PM

second - instead of fighting us on the concept, give us different resources instead - replace the ones you don't like with ones that can be helpful

Trisha Torrey · 9:01 PM

maybe provide us with "information prescriptions"

Ted Eytan · 9:01 PM

And actually, that's easier to do in the long run than shutting people down - what I've found for sure.

Ted Eytan · 9:01 PM

Patients are the hugest asset for improving the accuracy of diagnoses in my opinion.

Trisha Torrey · 9:01 PM

great point - shutting patients down causing them to lose trust, and if you lose trust, you'll never really provide what a patient needs

Ted Eytan · 9:02 PM

A lot of times, the wrong diagnosis happens because the patient isn't listened too carefully.

Trisha Torrey · 9:02 PM

you took the words off my fingertips :-)

Trisha Torrey · 9:02 PM

OK Ted, so What are the 2-3 things doctors need to learn or do better in the era of self diagnosis?

Trisha Torrey · 9:02 PM

correction: the 2-3 things PATIENTS need to learn to do better (sorry)

Ted Eytan · 9:03 PM

Before I answer, PS, forum people, vote up the other comments so we can spotlight them!

Ted Eytan · 9:03 PM

★ Spotlighted from Tawkers Admin

“The Forum is filling up. The more people in the room, the more likes a comment requires to get Overheard and shown to the Hosts. Be sure to vote up the comments you like.”

Ted Eytan · 9:03 PM

★ Spotlighted from Carla Berg

“Love the concept of an "info rx"!”

Ted Eytan · 9:03 PM

Here goes on your question -

Ted Eytan · 9:04 PM

Let me start with what I don't like, which is guides on telling patients "how to behave" in their health experience.

Trisha Torrey · 9:04 PM

I always say that's like the doctor fox telling the patient how to behave in the healthcare henhouse.

Ted Eytan · 9:05 PM

We have to remember that patients are not demanding, it is their health issue that demands the attention, so learning to ask for what you want and to be listened to is important.

Ted Eytan · 9:06 PM

2nd thing, is to advocate or bring and advocate, and don't let things sit. When I involve Kaiser Permanente members in our work, I always check in and tell them to not wait if they have concerns.

Trisha Torrey · 9:06 PM

amen amen amen... people remember only 10% of what they hear - a second person in the room improves the rates of conversation and adherence - win win for everyone

Ted Eytan · 9:07 PM

OK, last question!

Ted Eytan · 9:07 PM

Are patients really at risk of drowning in information in 2013? Do you think they're capable of managing and understanding bias and quality online?

Trisha Torrey · 9:07 PM

great question! yes and yes - but with some caveats

Trisha Torrey · 9:08 PM

Again - no one teaches us to be smart patients, but we can definitely learn to be discerning. So the important part is to learn what CAN and CANNOT be helpful.

Trisha Torrey · 9:08 PM

My first rule is to Follow the Money - one of the best ways to figure out how useful information will be.

Trisha Torrey · 9:09 PM

I've actually put together a list of "rules" for finding credible and useful health information online... http://patients.about.com/od/researchandresources/a/internetcred.htm

Ted Eytan · 9:10 PM

This is great, because this is how physicians can help so much - not what to read, but how to read it.

Ted Eytan · 9:10 PM

We are GOOD at this. We like doing this!

Trisha Torrey · 9:10 PM

Give a man a fish - and all that.... I'd rather teach patients how to fish for the good information. Serves them so much better.

Ted Eytan · 9:11 PM

I feel like nothing makes a doctor happier than a patient who is helping themselves be healthier :)

Trisha Torrey · 9:11 PM

what do you think - shall we have another Tawk one day?

Ted Eytan · 9:11 PM

This was kinda cool. I'd like the participants to weigh in - does this work? It's a little different...

Trisha Torrey · 9:12 PM

what do you think - among our guests - would you drop by again one day?

Ted Eytan · 9:12 PM

★ Spotlighted from Trey Williamson

“Ahh I was so late to this... Just went back and read. Great stuff, hope to catch your next one. So many questions!”

Trisha Torrey · 9:13 PM

Ted - thanks so much for this... I do think it's been fun and useful. We should do it again.

Trisha Torrey · 9:14 PM

Question from Mark...

Trisha Torrey · 9:14 PM

★ Spotlighted from mark harmel

“Sitting on the sidelines "listening" is less interesting than interacting. Did you see any of the comments?”

Trisha Torrey · 9:14 PM

Yes - Mark - we do see the comments - then we pull them in as it makes sense...

Trisha Torrey · 9:15 PM

Time to go... thanks everyone for stopping by. We'll keep you posted on our next Tawk!

Ted Eytan · 9:15 PM

AND we're still on twitter! Just tweet us from here at @tedeytan and @trishatorrey - good evening everyone!

Forum · 36

Forum· 36 comments

217 visitors

Tawkers AdminAug 17, 2013, 12:46 PM

Welcome to the Forum! To get involved, click “Who is Here” and “Listen” to others in the Tawk. And don’t forget to “Like” comments you want the Hosts to see. They only see comments that get enough likes to become “Overheard”

Tawkers AdminAug 22, 2013, 1:23 PM

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Jordan BirnbaumAug 29, 2013, 8:32 PM

So, am I correct in assuming that self-diagnosis is a bad thing?

Blake IanAug 29, 2013, 8:34 PM

@Jordan Birnbaum - I had the same question. I think of self diagnosis as related to hypochondria

Jordan BirnbaumAug 29, 2013, 8:34 PM

@Blake I think of it as representing yourself in court.

Alex LowenthalAug 29, 2013, 8:36 PM

I think it's cool - so much of medicine is algorithmically driven - equip the patient!

Alex LowenthalAug 29, 2013, 8:37 PM

If it is protocol guided - couldn't it be structure the same way as an office visit?

Jordan BirnbaumAug 29, 2013, 8:40 PM

good thing you didn't decide to go out in a blaze of glory!

Jordan BirnbaumAug 29, 2013, 8:40 PM

do doctors use the Web as much as patients?

Bart WindrumAug 29, 2013, 8:41 PM

Due to my area of focus, end of life matters and reform, I'm interested in the issue of terminality—in this tawk's context, self-declaring terminality rather than requiring an MD terminal diagnosis

Alex LowenthalAug 29, 2013, 8:42 PM

There is no way one person could known everything there is to know about modern medicine - I expect my care team to use the web!

Rachael WorkmanAug 29, 2013, 8:43 PM

but @alex it's tough to determine what is and isn't a credible source, no?

Alex LowenthalAug 29, 2013, 8:46 PM★ Spotlighted

“Any system of care that depends solely on the personal knowledge and analytic capabilities of physicians alone cannot be trusted.” ;-)

Alex LowenthalAug 29, 2013, 8:46 PM

I am pretty sure that was Dr.Lawrence Weed ...

Alex LowenthalAug 29, 2013, 8:48 PM

@Rachael Workman - That is where evidence based medicine comes into play...

Rachael WorkmanAug 29, 2013, 8:51 PM

@alex like with case studies and such? i feel like, depending on the condition/situation, that could be a lot for the average laymen like myself to dig through and digest...

Carla BergAug 29, 2013, 8:51 PM

@jordan re doctors and time, old attidue was "I am not getting paid" -- but today with many more credible sites for MDs I hope most go on web more often and willingly

Alex LowenthalAug 29, 2013, 8:51 PM

At the end of the day if we really want Pt engagement - isn't self- dx a foundational element?

Alex LowenthalAug 29, 2013, 8:52 PM

@Rachael Workman Ur right there need to good triggers that fire when outliers present.

Bart WindrumAug 29, 2013, 8:52 PM

(@Carla) anyone know how many and what quality online resources exist for doctors (at a doctor's high competence level)?

Jordan BirnbaumAug 29, 2013, 8:54 PM

I would definitely use the kit.

Alex LowenthalAug 29, 2013, 8:55 PM

Folks are already using such a tool....Virtuwell outta Healthpartners for example https://www.virtuwell.com/

Carla BergAug 29, 2013, 8:56 PM

(@Bart) Doximity (for community) and UpToDate (for latest studies) are two MD sites I know of

mark harmelAug 29, 2013, 8:56 PM

The best self-diagnosis site for patient I know of is at Mayo. Is the experience with patients different there because they are taught to use the tool?

Bart WindrumAug 29, 2013, 8:57 PM★ Spotlighted

Ted/Trisha: re pre-appt self diagnostic tool: I'd use it but it would need to be high quality and with a good user interface, plus ability to save and xfr/download entries, etc. You get the idea.

Carla BergAug 29, 2013, 8:57 PM

Question for Ted: What are some trusted "meta" sites for MDs giving latest medical info?

Tawkers AdminAug 29, 2013, 9:01 PM★ Spotlighted

The Forum is filling up. The more people in the room, the more likes a comment requires to get Overheard and shown to the Hosts. Be sure to vote up the comments you like.

Carla BergAug 29, 2013, 9:01 PM

Agreed, Trish -- the dismissive thing is so toxic. Shuts the convo right down.

Carla BergAug 29, 2013, 9:01 PM★ Spotlighted

Love the concept of an "info rx"!

Trey WilliamsonAug 29, 2013, 9:09 PM★ Spotlighted

Ahh I was so late to this... Just went back and read. Great stuff, hope to catch your next one. So many questions!

Rachael WorkmanAug 29, 2013, 9:11 PM

yes more tawks from you two, please!

mark harmelAug 29, 2013, 9:13 PM★ Spotlighted

Sitting on the sidelines "listening" is less interesting than interacting. Did you see any of the comments?

Carla BergAug 29, 2013, 9:14 PM

(@Mark) Agreed with you that open chat with guests would be good after the hosted portion

Bart WindrumAug 29, 2013, 9:15 PM

T&T, I'd like it better if you interacted more w/the audience earlier on, more integration. Perhaps you could do a "canned" QA btwn yourselves and post that first for early bird perusal or something?

Michele Renee RenaudAug 29, 2013, 9:15 PM

It seems not many Dr's appreciate self advocating patients. Especially when the health questions posed are in terms not expected by lay persons or patients.

Michele Renee RenaudAug 29, 2013, 9:17 PM

When a doctor refuses to answer questions that is time to get a new doctor...with or without having internet access that helps patients learn more about their conditions.