Topic: Patient Portal

The hospital has a web site for patients to sign into and see their appointments, records, etc. Here are my experiences using this technology.

NOTE: Posts within this topic are shown in chronological order, the oldest first.

If it’s on the Internet it must be true.

As with many hospitals these days, I can log into a patient portal and see my appointments, contact doctors, access my records, and more. So, like an idiot, I go into my account …

Remember that I have colorectal cancer, and between you and me, I am somewhat … nervous. I log in and this screen comes up:

Under my surgeon’s name it says “Colorectal Cancer is the #2 killer …” Is this supposed to make me feel better? I am to assume that it is my doctor’s talent that keeps it from being the #1 killer? Is this some advertisement for the doctor who is already my doctor? Additionally, wtf?

Then, under my hematologist/oncologist’s name is says she is out of the office for the next nine years, returning on my birthday. Nine years? Really? I spoke to her yesterday, did I scare her off?

Yes, this is going to be an adventure. Welcome aboard.

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“Without faith that there’s a world beyond the one we live in, I don’t see how it’s possible to get rid of angst.” ~Robert Smith

Quick review …

At the first Cerberus meeting I met my hematology / oncology doctor, Dr. Pye, along with the surgeon and radiologist. I was impressed with her and very glad she drew the short straw and I was her patient. A couple of weeks later Inanna and I had an appointment with her and learned more, it went very well. I did a bit of research, she is well respected, very intelligent, and everything one wants in a doctor.

My first day of chemo I was to have an appointment with her, but it turned out that she had some medical issues herself and was out for a while. I took this in stride, sort of, even though it was very disappointing. I was assigned to another member of the chemo team, and this doctor, Dr. Chemo2 was very impressive as well. Ok, I can deal with this, but I was still hoping that Dr. Pye would be back for my after-surgery chemo.

Once my chemo-radiation was finished I received a call for my cerberus II appointment, again the radiologist, surgeon and chemologist (?). The scheduler mentioned yet a third chemo doctor and I made it clear that was not acceptable. Why a third? After some studdering she scheduled Dr. Chemo2. That was ok, I liked him.

A bit later I needed a chemo appointment and saw Dr. Pye! She was only back for a short time. We discussed the upcoming appointment and she said that she may be able to be there but was not sure. She checked the 3:00 time. The odds are she would not be around after my surgery though. We agreed that I should see Dr. Chemo2 since he would be stuck with me responsible for my post-surgery care and potential chemo. Dr. Pye would try to attend if it worked out.

That evening I looked in the patient portal, and Dr. Pye was listed! The appointment was scheduled for next Wednesday, 3:00 PM. I was able to choose that time to make sure that Inanna could easily attend as well.

Last week I got a call telling me the surgeon wanted me to have a flexible sigmoidoscopy, a camera up my butt. Ok, fine, and it was scheduled for 12:30 next Wednesday, before the cerberus II appointment.

A bit after I got that call, I got an email with instructions. The email started “Dear Mary,” … that is an actual quote, I did not make up that name, and no, my name is not Mary. Not even close. They actually sent me someone else’s email. I certainly hope a gynecologist does not walk in with a flexible anything …

This is what I knew:

  • Flexible sigmoidoscopy (with or without Mary) at 12:30
  • Cerberus II appointment at 3:00
  • Chemo hematologist: Dr. Pye (if possible) and potentially Dr. Chemo2

And that brings me to today.

I looked in the patient portal to double check a different appointment. I noticed a couple of things …

  • No flexible sigmoidoscopy scheduled
  • The cerberus II appointment was moved earlier to 1:15
  • Dr. Pye was the only chemo doctor listed; it also says, and this is a direct quote, that Dr. Pye is “Out of office through 10/22/2027”

No angst here. I am just the fucking patient with the cancerous tumor and they are changing appointments, canceling appointments and not telling me. And no, it’s not chemo brain. At least not on my end.

Of course it takes three calls to kind of figure out what is going on.

The flex sig (that’s the lingo those in-the-know use) is scheduled at 1:15 but what the portal does not say is that I need to show up at 12:30 so in fact the flex sig is for 12:30; but my butt won’t be violated for 45 minutes. I guess they don’t put that in writing. And, without telling me, the appointment with the three doctors is immediately after the flex sig, so in fact that appointment is listed as 1:15, but is really 1:30, and yes, changed from 3:00. Without telling me. The victim patient.

Actual schedule (maybe) for the day:

  • Flexible sigmoidoscopy (with or without Mary) sometime between 12:30 and 1:15
  • Cerberus II appointment at 1:30
  • Chemo hematologist: No clue even though it still says Dr. Pye who is out for the next 3370 days!

So, when the scheduler said:

how about scheduling the flex sig for 12:30?

and said NOTHING ELSE ABOUT THE OTHER APPOINTMENTS what she really meant but DID NOT SAY was

we can make the flex sig for 1:15, change the three doctor appointment to 1:30 and need you to get here at 12:30.

Never said any of that. Did not put that in the patient portal.

I don’t know which chemo doctor will be there, Dr. Pye had said the 3:00 time was potentially possible. Did they check with her? That was weeks ago before listing her as out until 2027. If it is not her, will it be Dr. Chemo2? Are we back to the mystery doctor behind door number 3? If a third doctor shows up I may lose my shit. I have a relationship with these two, for what that is worth. And since my life is in their hands, it is worth a lot. To me. The fucking patient. I am already really not happy about this. I don’t need more angst in my life, thank you very much.

Inanna now needs to take time off work to make the appointment. And it is a damn good thing I happened to look, otherwise she would have missed it and that is not a minor thing.

  • Who changed the appointment?
  • Why was it changed?
  • If it changed because of the flex sig time, why was I not told when I agreed to the 12:30? (This is the same shit they pulled when my radiation was scheduled for daily appointments and no one told me the relationship to the weekly chemo appointment. That’s another rant for another time.)
  • Why does the patient portal say nonsensical things?
  • Who the hell is Mary and does she have my email? Will we be in bunk-cots and have dueling flex sigs?

Color me not happy.

Seriously. This one will be keep me up tonight. Is it too much to know what doctor will be there? Am I asking too much?

If you work in a hospital, IF YOU WORK IN MY HOSPITAL, watch this four minute video. Really. Please. As if my request means anything.

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It’s not what you write, it’s what they read

When you write a letter, an email, an opinion piece, a blog post, etc. what you write is not as important as what the recipient reads. A recent opinion piece in the local paper was an attack on the school administration yet was mostly read as an ableist piece against students. I tell people all the time, proofread things through the reader’s eyes. (There’s that empathy thing again.)

This goes for websites as well. Especially patient sites. I am using my hospital’s (“my” as in the one I go to, not the other one that I own) (ok, I don’t own a hospital) patient portal and, well, it actually makes my life more difficult than if I did not use it. I know I can be a curmudgeon but hey, I have cancer, be nice to me.

I want to show you what I am dealing with. Keep in mind that I do a good amount of web design but this is not about my thinking I can do it better (and hell yes, I can) but it is about showing issues and maybe this will work its way back to the designers. This blog is anonymous, I do not want to call out the hospital or its IT department in any way. The ONLY changes to these screen shots are proper nouns and phone numbers. Really. And I will do my best to not offer opinions, only facts. Let’s see how that part goes.

Note that I get emails saying …

You have an upcoming appointment with one of your health care providers. Please sign in to the Patient Portal to check your appointment schedule on your Home page.

Here is the important part of the home page. I sign in and see this along with a main menu, etc. but this is the prominent center of the screen:

We (me and you, aren’t you lucky?) are going to look at various parts of this from many points of view. The information it conveys (or does not), ease of use, accessibility, validity, etc. Clicking on the images will enlarge them if you so desire.

Demoralization and crushing of hope

Note that the “Care Team” on the right side of the screen is made up of doctors and providers who I have seen and am working with. It is vital to note, they are not doctors I have not seen, it only shows those providers for whom I am already a patient.

Every time I sign into this site I see my surgeon (extremely highly regarded) telling me that

Colorectal Cancer is the #2 killer …

Number 2 after what? Natural causes? Am I going to die? This is not an advertisement telling others they need to check for colorectal cancer because if you see these words you are already being treated by a colorectal surgeon! WTF. I have colorectal cancer. Pretty much everyone reading those words has been diagnosed with colorectal cancer. Let’s remind me I am dying. And yes, I have read the rest of the paragraph.

Hey, pal, do you know the time?

(Ignore the 9:00 AM CAT scan for this discussion.) I have been told that I have an MRI at 9:30 in the morning. The written notice I received clearly says (bold is in the original) …

… arrive in the MRI department 45 minutes before your scheduled exam start time.

And during the reminder phone call the gentleman stressed that I …

… must arrive an hour before, at 8:30.

So what is the essential time in this case? The patient portal is there for me to see my appointments as the referenced email states. It appears that in this case, the 9:30 AM time is completely moot. That is not when I need to arrive, and if in fact I arrive at that time, they will have to reschedule me (according to the gentleman on the phone).

This item on the schedule for 9:30 is problematic unless I remember to get there 45 60 ? minutes early. How to remember? I cannot write it on the home page to which I am supposed to refer.

I know what you are saying … “Just click for instructions as it says!” Ok, I will, and this opens up:

Well that is not terribly helpful.

But wait, there’s more! What is that in red? Why is there any text in red and what does it signify? And a “CLICK HERE” … seeing that I always do as I am told, I will click yet again for some instructions (but not on the red, that does nothing) and this comes up …

Good. I feel so much better instructed now. I don’t have questions, I don’t know that the time on the home page is wrong-ish.

So what time do I show up?

Who? Huh?

I have the cerberus appointment on Wednesday. Who will be there? Well, it appears the wonderful Dr. Pye will be …


But whatever you do, DO NOT LOOK ON THE RIGHT SIDE OF THE SCREEN SHOT … DO NOT LOOK AT THE “CARE TEAM” LISTING …

Damn, you looked.

Dr. Pye appears to be out of the office for the next nine years, which is actually a good thing since I hope to be alive in nine years and that date, B”H, will be my 70th birthday. She will be my present! But will she be at the meeting on Wednesday? If not, who will be taking her place?

Excuse me, huh?

I know you are looking at the CARE TEAM list and wondering, is there any way to edit the list? Can I add or remove doctors? Of course there is, just look at the bottom of the CARE TEAM column.

Here is it clearly noted that your providers are automatically added to this list “after you’ve had a kept appointment …” I know what a kept woman is (not that I have any experience in such things) and I know all too well what it is to be verklempt, but a kept appointment? Heck of a place for a past participle … And if you click on Edit Providers, you can remove someone from the list but neither add nor change anyone. Is that editing or removing? Definitely not kepting.

Flexible? I can bend in all sorts of ways.

Let’s not forget about my flexible sigmoidoscopy on Wednesday. I need to be there at 12:30 PM for it to happen at 1:15 PM for my 1:30 PM cerberus appointment. You can see that clearly in this part of the schedule …

“All the truths of mathematics are linked to each other, and all means of discovering them are equally admissible.” ~Adrien-Marie Legendre

Most, if not all, web design “best practice” lists specify that links should be highlighted in some way and all formatted alike. The classic is underlined blue text, but that is becoming a relic for many reasons. For accessibility, readability, understand-ability, etc., links should look and work the same within a site. It is simply best practice.

Here is my home page on the Patient Portal with all links (that I can find so far) highlighted.


Let’s see how links are identified:

  • Blue virtual-buttons with white text
  • Bold black text with “(Click for instructions)”
  • Bold black text without “(Click for instructions)”
  • Blue-ish text with no decoration
  • Blue-ish text, underlined

A designer could argue that the schedule listing items are not true links (<a> tags) but are list items (<li> tags) but this is only a partial and weak argument, especially with some having the additional, although somewhat fallacious “Click for instructions” instruction. Five different link-identifying styles? None explained. Simply stating “Click on a scheduled item for further information” would work since all minimally open up to show the location of the scheduled event.

(Here is a fun thing to try … see the handicap logo at the top right of the browser window? It has always been there. Click on it and click on “UNDERLINE LINKS.” Then CLOSE. You will now see four links in my previous paragraph. Didn’t know they were there? Pretty useless having links you don’t know exist, huh? Now undo what you just did or it will drive you crazy.)

Speaking of accessibility

There are Web Content Accessibility Guidelines (WCAG) put out by the W3C Web Accessibility Initiative (W3C WAI) under their tag line “Strategies, standards, and supporting resources to make the Web accessible to people with disabilities.”

Web Content Accessibility Guidelines (WCAG) is developed through the W3C process in cooperation with individuals and organizations around the world, with a goal of providing a single shared standard for web content accessibility that meets the needs of individuals, organizations, and governments internationally.

The WCAG documents explain how to make web content more accessible to people with disabilities. Web “content” generally refers to the information in a web page or web application, including:

  • natural information such as text, images, and sounds
  • code or markup that defines structure, presentation, etc.

The U.S. Department of Education mandates that school district websites be accessible and has several initiatives in this matter. It falls on the Office of Civil Rights to enforce this, and they do.

Section 508 of The Rehabilitation Act compels federal government agencies to make all of its electronic information and technology fully usable by people with various disabilities. This means that websites, software, webinars and PDF user guides, to name a few examples, have to meet specific accessibility requirements to comply with the law. The revised Section 508 refers to the Web Content Accessibility Guidelines (WCAG) 2.0, Level AA.

Although Section 508 as it’s written does not apply to the private sector, nor does it apply to recipients of federal funds, some funding agreements have nevertheless incorporated the requirements of Section 508 as a condition of receiving funds. For example, Medicare and Medicaid rules state that healthcare institutions receiving reimbursements through these programs must make program information “readily accessible” to the public. In the most recent update, readily accessible information is defined as “electronic information and services which comply with modern accessibility standards such as section 508 guidelines, section 504 of the Rehabilitation Act, and W3C’s Web Content Accessibility Guidelines (WCAG) 2.0 AA and successor versions.”

When I run my home page in the Patient Portal through a standard Accessibility Checker against WCAG 2.0 AA I get 15 errors and 3 warnings. Those numbers are a tad misleading because, for instance, there are 92 instances of “Info and Relationships 1.3.1” flagged as errors and 17 warnings. There are 8 warnings of insufficient color contrast.

Ugh.

Let’s do a quick review

  • Depressing information: I have the #2 killer of bloggers and other mere mortals
  • Bad information: Dr. Pye will be at my appointment
  • Misinformation: Dr. Pye is out for 9 years
  • Missing information: Flex sig anyone?
  • Lack of information: When appointments really start
  • Confusing information: Where links are; what is clickable
  • Accessibility: If the hospital has patients with disabilities, this may be an issue

And this is only two information boxes out of many just on the home page.

No, I don’t have way too much time on my hands. I have cancer, you know. The number 2 killer of crotchety bloggers.

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“I have a lifetime appointment and I intend to serve it. I expect to die at 110, shot by a jealous husband.” ~Thurgood Marshall

(Gotta love Judge Marshall)

The hospital called today.

This is a reminder that you have a 1:15 appointment tomorrow with Dr. Hunter and Dr. Pye.

I said thank you and that was it.

The patient portal says:

Three doctors at 1:15. That is the cerberus II appointment.

This is from the email I got about tomorrow. Note that the name “Mary” is exactly how the email came, and my name ain’t Mary, and the bold is in the original …

Dear Mary,

This email is to inform you that your Flexible Sigmoidoscopy appointment with Dr. John Hunter has been scheduled for the following date:

Wednesday, August 8, 2018 arriving at 12:30PM for a 1:15PM procedure.

…

I did get the same email a bit later with my real name and the same information. It is a 10 minute procedure, at the most, but not the appointment with three doctors. So no reminder of the flex sig and it is not in the portal. Or is it all one appointment since Dr. Hunter is involved with both?

I will get there at 12:30. Dr. Pye will show up over nine years late, and lord knows why Dr. Roentgen will be there or when.

And yes, I am anxious. At some point tomorrow I will find out the results of the CT, MRI and flex sig. I will learn if the tumor has grown or shrunk (or is it shrank? … The past participle is the form of the verb used in the present perfect tense, which shows action completed at the time of speaking, hence shrunk should be correct.) Has the cancer spread to the lungs or liver? Did the chemo-radiation make any difference at all? Has the tumor miraculously vanished and I’m just full of shit?

Everything I know points to some good news. My nuts no longer hurt and the assumption is that the tumor is no longer hitting some otherwise useless nerve and hence has shrunk. Other than the last two days, my bowels seem to be functioning more like my baseline of a year ago (late yesterday and today I believe have left over effects from the laxative and contrast). My CEA level (cancer marker in blood) has gone down. I am not dead yet.

And what Plato says, That there are few Men so obstinate in their Atheism, that a pressing Danger will not reduce to an acknowledgment of the Divine Power… ~Michel de Montaigne, French Renaissance philosopher and essayist

Hence, now that we know there are no atheists in a situation such as this, it is only appropriate to research if there is a prayer for my czar of a tumor …

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“Empathy is the starting point for creating a community and taking action. It’s the impetus for creating change.” ~Max Carver

At the cerberus II meeting I mentioned my dismay at the patient portal. I forget exactly who I was speaking to but they made it very clear I was preaching to the choir. I believe that. I also believe that none of the designers and coders on the project have had any significant illness and needed to use the portal.

Today, out of the blue, I got a voicemail. Not sure why my phone did not ring, but that’s ok. Here is the transcript:

Hi, this is Susan calling from the patient portal at the medical center. I was just giving you a call to assist you with the patient portal. If you are still looking for assistance  or have any feedback you can feel free to send us an email. Our email is patient-portal@big-city-hospital.com. Have a nice day, bye.

Ok. Well, someone ratted me out. The only question I have is “Aren’t you embarrassed by your site?” but alas, I did not get the call and she did not leave a number (caller-id was an outgoing number only). So I decided to write an email:

Someone (Susan?) just left a voice mail saying that if I am still having problems with the site, or feedback, I should send you an email. Unfortunately she did not leave a phone number.

If you want feedback, you can look at this blog post, that talks about just a small portion of the issues with your site. You will see that names and phone numbers have been modified because my intent is not to call out your institution or your IT team.

https://disableddad.com/its-not-what-you-write-its-what-they-read/

That was sent at 11:20 this morning. I noticed in the back end of the blog a couple of hits directly on the blog post from the hospital, around noon time. Then another at 5:01 PM.

Then this arrives at 5:12 …

I wanted to thank you for your email and incredibly valuable and timely feedback. We are currently planning a redesign of the patient portal and your blog certainly helps my teams efforts. Through this project we will work with the technical and operational folks to resolve the inconsistencies you have documented.

Please feel free to reach out to me directly if there is anything else you would like to discuss related to the patient portal.

With appreciation,

Alice
Director of Strategic Initiatives

Interesting, and it appears someone does care, kind of. I end the email trail (at least for now) with this response …

My goal with the blog is not so much as to give your institution feedback (since when I have tried in the past it was futile) as to vent my frustrations and let other cancer patients know what may be ahead. As you saw, I do not call out whose website it is. Much of the blog, unfortunately, is turning out to be essentially feedback for the hospital as you can see in today’s post and that is a tad frustrating.

I am going to turn around your last line and say … if there is anything else you would like me to discuss with you and your team, feel free to reach out. I have designed many websites over the years, taught computer engineering at a local university, etc. and am more than willing to share, but ultimately I don’t know how much time I really have left in the global sense; I am not into wasting it. But trust me, you want to know something (feedback, etc.) I will absolutely love to share. Or keep reading the blog, plenty more frustrations, many around the built in email system.

Enjoy the weekend, I greatly appreciate your note, and again, will assist with feedback or whatever as long as it will really be useful.

I am looking forward to see what happens. Let’s take bets on if anyone will want to speak to a cranky old blogger with cancer up his ass who may actually know something about something.

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“’Email is the scourge of our age,’ said Silvia. ‘Email and cancer.’” ~Olivia Sudjic

Thinking back on the cerberus II appointment, it was mostly good news. There was the one issue of a single new lymph node that was enlarged. In the midst of the meeting I did not question that, but on the way home I wish I had. So I signed into the patient portal and went to the email section.

I sent the email to both the surgeon and the radiologist since they were the two in the room and both had commented on said lymph node. Again, only names are changed:

Message Date/Time: 8/8/2018 7:07 PM
To: Hunter, John MD;Roentgen, Wilhelm MD
Cc:
Subject: Follow up about lymph node
Doctors:

It was mentioned during today’s meeting that except for one, all the lymph nodes shrank and that is good. One, I believe “above” the rectum, was enlarged.

What does this mean for me? Is it ignored for now? Will it be removed during surgery?

Thank you for your time today.

Simple enough not too long, the answer I would expect to be short and simple. This is what I received:

From: Smith, Sheron admin
Message Date:8/9/2018 7:36 AM
Read Time: 8/9/2018 8:56 AM

Good Morning,

that lymph node will come out at surgery and we will see what it is.
It doesn’t mean anything one way or the other until it is out and in the hands of the pathologist.

Best Regards,

T

I have no fucking clue who this person is nor why an “admin” is responding. Especially one that does not know the rules of capitalization. And the “we”? He or she will see what it is and help make a decision? And what is with the signature of “T”?

To which I had a simple reply, and yes, I deleted the “the fuck” part of the question.

Message Date:8/10/2018 8:27 PM

Who are you?

We are back to the empathy part of the equation. Let’s say a big-city-top-rated-doctor had her own medical issue. She was dealing with something out of her field … maybe breast cancer. She had a question for her doctor and sent an email, and the response came back from an unknown administrator. Would that be acceptable to her do you think? Or the top administrator of a hospital, the chairman of the board, would they accept an unknown non-medical person answering such a question?

I understand time pressures, I understand pain-in-the-ass patients, I understand bombardment by emails. I don’t understand the lack of a simple …

Hi. I am Dr. Hunter’s admin. He asked me to pass along that …

But noooooo, I am left to follow the advice or knowledge of an unknown admin who, for all I know, is in charge of writing directions for prescription labels.

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