I’m giving up on patient portals.
I asked my doctors to deactivate my accounts and I’m sticking to email.
For years, I’ve been excited about the development of patient portals and electronic health records. I’ve been excited about the opportunities they could afford patients to communicate with doctors, keep track of records, and have access to their lab results. I was glad that Meaningful Use regulations were going to push doctors into this “digital age,” to strong arm them to adopt patient portals and use them (although truthfully their use was never really meaningful enough). But I am giving up now.
I’m giving up because the patient portal is not about the patient at all. They have not improved my quality of care and they cannot serve me adequately as a patient.
First I want to talk about the push back I get for using emails and later I will tell you why I stick to using them anyway.
Of course the biggest push back I get for using emails is HIPAA. Not even a real reason – just “you need to use our portal because of HIPAA.” Sometimes they’ll actually tell me that I need to use the portal so our communications will be more secure. But there are 2 things wrong about this claim.
a. I have the right as a patient to receive communications in the manner I choose and I cannot be forced to use a portal. Guidance on HIPAA given by the Department of Health and Human Services (HHS) states:
…an individual has the right under the Privacy Rule to request and have a covered health care provider communicate with him or her by alternative means or at alternative locations, if reasonable. See 45 C.F.R. § 164.522(b). (italics added)
This includes email.
For example, a health care provider should accommodate an individual’s request to receive appointment reminders via e-mail, rather than on a postcard, if e-mail is a reasonable, alternative means for that provider to communicate with the patient. (italics added)
The guidance goes on to state:
…if the use of unencrypted e-mail is unacceptable to a patient who requests confidential communications, other means of communicating with the patient, such as by more secure electronic methods, or by mail or telephone, should be offered and accommodated. (italics added)
Take note here. Because the example of unreasonableness relies on the patient, not the provider. It is if the patient wants to use a different method of communication that the provider must accommodate.
Furthermore, when requesting records, the government states that “…a doctor may not require an individual…To use a web portal for requesting access, as not all individuals will have ready access to the portal.”
In other words, a provider cannot force me to use their portal, because… HIPAA.
The second reason I get related to HIPAA is that emails are not secure. This may be true for most individuals. Patient portals do have to meet specific guidelines to be HIPAA compliant including levels of encryption, information that is backed up, and protections to prevent hackers from accessing or changing your health information.
Given the work I do, I am also required to meet many of these specifications, thus the assertion that the portal is inherently more secure than my email is incorrect.
And to be honest, even with the security measures, your information is never completely secure. Just take a look over at the Office for Civil Rights HIPAA News Room. Or do a Google search to see the latest information on ransomware alone. I hate to break it to you, but promises of security don’t stop bad actors from trying to get your information and hackers have become more creative at getting that information over time.
Finally, even if my email is not all that secure, I still get to choose not to use the portal. The provider needs to notify me that it might be less secure to use my email. But I have the ultimate choice. The cannot say as they have, that I must use their portal because of HIPAA security concerns.
In fact, they can’t use HIPAA really at all.
Why I Like Email
Now that we understand that I can in fact choose to use email, let me explain why I like it.
1. Communication among multiple providers
In May, I sent an email to my providers, all 16 of them in one email. I did it because of the limitations of portals that do not allow my providers to communicate across different practices or include more than 2 people in an communication at any one time. Sometimes I need all 16 of my providers to get on the same page. Other times I need two providers to communicate and I want to be part of that discussion. Portals don’t allow that.
2. Multiple Portals
In tandem with Number 1, I don’t like to use portals because each provider has a different portal. Currently I believe my providers use Epic, Greenway, eClinicalWorks, and Athena. I don’t like any of them and I don’t like that I have to go to a separate website and have a separate login for each of them.
There is always talk of interoperability and my records somehow getting from one system to another. I’ll believe it when I see it. Right now, there’s too much money in it for these companies to keep their portals separate, to keep doctors paying for their product and to not share that information. Right now, there are too many portals for me – portals that don’t connect my providers, portals that I have to manage and make sure have all my information up to date – portals that waste my time.
3. Access to my information
When I use a portal, my message is now in my provider’s hands. I can see what I sent and can copy and paste it into a document in my own files. But it is now part of my file and to get access to it outside the portal, I have to request my records. I don’t want to make a request for my records. I don’t even want to login to find a message that I sent when it is far easier to search for it in my own email account when I need it.
In my opinion, using email keeps the records under my control at all times and I like that.
4. Other portal limitations
Almost all portals have ridiculous limitations that prevent me from communicating with my provider as I need.
Most portals limit messages to a certain number of characters – generally 500 in most of my portals. As anyone who knows me can attest, 500 is not enough for me to convey what I need to most of the time. I don’t like to operate under the same rules as Twitter to get my message across. Sometimes I need to write more detail. If I’m using the portal then, that means I either don’t get my full message across, I have to send multiple messages, or I give up on the portal and send a fax. That’s not okay with me. I want to type a long email if I need to.
Sometimes I need to add an attachment to my message. I can’t do that in portals. Maybe it’s a picture of something that’s concerning me. Maybe it’s a pdf of an article or study I want to ask them about. Maybe it’s an xray they don’t have in their system. Maybe it’s the excel spreadsheet including every blood test I’ve had since 2002 so we can compare results and trends. This is important information that needs to get to my doctor and I can only really do that in an email at this point.
Remembering an extra password
This may seem like a stupid reason, but honestly I don’t want to remember an extra password. I have to remember too much else about my healthcare and daily life that one more piece of information that I don’t need to remember is one that I will skip out on.
And really it’s not just one more password, it’s at least 4 because there are multiple portals and I have to create a user name and password for each (and I’m told not to use the same password for every account). And even then it can be multiple portals and multiple user names for even the same portal provider. I remember talking to Athena about this back in 2012 – that if 2 providers in different offices both use Athena, I have to set up 2 separate accounts even though all of my information is with Athena? Yep. So even if my providers all use Athena or all use eClinicalWorks or all use Greenway, I have to have multiple logins for each provider. I’m not doing that anymore. I just can’t. It’s a waste of my time and energy.
The irony is, by using the portal, my information is no longer really private. When I send a message through the portal, often times it’s a nurse that sees it first. At the WISH Clinic in the UCHealth system, the nurses respond to my message sent through the portal before it ever gets to a doctor and then tell me a doctor will get back to me. That is (a) a waste of everyone’s time because now I’m getting an email in my regular inbox telling my I hvae a message in the portal so I log in to the portal to find a message from a nurse telling me to wait for another message in my email inbox to tell me that I have another message in the portal and hope that this time when I log in that the message will actually be from my doctor. And (b) I do not want the nurse to see my message at all necessarily. When I write my doctor about something sensitive – whether it be about my reproductive health or my mental health, I don’t necessarily want a nurse in on the conversation. In a weird paradox by using the portal, my privacy is breached (though not as would be defined by the law). I’m not okay with that. I only want to get one email saying there is a message in the portal and I want to log in one time to see one message from the person I actually sent the original message to. Is that too much to ask for?
No portal has all my information. This is why I carry around a 12 page document summarizing my health history – specifically tailored to include the most important information that every doctor needs to know. I’ve spent a lot of time on this document to make it easily accessible to providers – to write it in a way that they will understand and can digest. I’ve also spent a lot of time getting the pertinent information in there including – allergies, diagnoses, important blood test results like my HbA1c, list of medications, social determinants of health (where I live, that I’m single, that I have never smoked, etc.), surgeries, hospitalizations and procedures, onset of each diagnoses, family medical history, mental health history, current providers, and insurance information. It’s all there. And if it isn’t there, I have all of my 12.2 GB of records backed up electronically so I can pull it up on request.
I cannot tell you how many compliments I get on this document. Doctors and nurses and everyone else who gets a copy loves this document. The problem is, the document never makes its way fully into my portal records. And even if a majority of the information gets in, it has to be redone for each portal and updated for each portal every single time. Not to mention, I can’t update the information, I have to rely on the doctors or clinic staff to update it.
This is why patients carry around big pink binders of their medical records, because no portal has it all, because there is no interoperability to make sure the information is available for each provider, and because for now, my paper copy is simply just better. So why should I log in to use a portal that doesn’t have all my information anyway? Why should I send messages through a portal that is more limited than a word document and a simple email account? There is no benefit in it for me.
I think I’ve made a compelling argument for why I chose to use email rather than communicate with my providers through a portal. I’ve talked about the push back I’ve gotten from doctors that really mean nothing. But now it’s time to talk about the excuses doctors make when they don’t want to use email. And let’s be clear here, these are all about them, they do not have to do with the patient at all.
1. “My inbox gets full”
The number of times I’ve heard a provider say that their inbox gets full makes me want to scream. Everyone’s inbox gets full and no one else gets to complain about it when that is part of their job. In fact, as a lawyer, if I said that I just couldn’t get to a client because my inbox is full, I would have some steep ramifications to face with the Bar. I know people who have gotten in big trouble with the Bar for not answering emails. So if I’m expected to answer emails, and my inbox gets pretty full to, why can’t I expect my doctor to check and reasonably answer their emails? Everyone else can do, you can’t use that as an excuse.
2. It takes more time
I’ve had various versions of the email meaning that it takes up more of the doctors time. One is that they are on the portal more often and have to switch over to their email. Ok. So it’s fine for me to waste my time from going from my email to your portal but it’s not okay if you have to switch from your portal to your email? No.
Another version of this is that they will now have to spend the extra time to copy and paste my email into the portal or print it out and scan it in so it can be part of my record. Most doctors don’t even keep copies of emails as they should. When I request my records, I rarely get back a copy of any emails I sent outside the portal though those are part of my record too. And so what, it takes an extra step or two for you. Again, you think it’s okay for me to take extra steps, but you shouldn’t have to?
I waste enough of my time for doctors for which I don’t get paid. I waste time in waiting rooms and sitting by the phone and coordinating care. I waste my time explaining HIPAA to them because they refuse to acknowledge that I’m an attorney who has done most of her work in this area. I waste my time explaining health policy to them and bringing articles to them about the patient experience that they will never read because they can’t be bothered (or as they claim, they don’t have time…). I waste my time writing feedback forms for them and I waste my time writing up postmortems when things go absurdly wrong in their clinic. I waste my time logging in and out of portals and putting together spreadsheets of my information and writing out 12 page personal health records to print out and bring to each provider.
I do not get paid to do any of those things. Doctors do get paid for those things. Doctors get paid a lot to do those things though they will claim it is never enough. My job is to be the patient and to seek medical advice. Their job is to help me get better. Asking me to do more work, to waste more of my time for free, makes me worse off.
3. We haven’t done it this way before
This is an easy one to field. I’ve had doctors tell me they don’t like using email because they’ve never done that before or some version of that’s not how we do things. It’s a horrible excuse because they also never used portals before they started using portals. So I’d just say, start using email, then you’ll have done it.
4. Administrative burden
This is a version of Number 2 and one that maddens me more and more. I recently saw a few tweets to this effect, bemoaning how hard the electronic health/medical record systems are on doctors:
These tweets offend me on so many levels. The first of which is the self-centeredness doctors have about providing care. Don’t get me wrong, I think doctors do have a hard job, but I also believe they get paid to do that hard job but if they claim they don’t get paid enough, I would respond by saying I’ve never seen a doctor on food stamps, but I’ve seen plenty of patients go bankrupt from medical care. And yes, while you do have student loan debt, you aren’t the only ones.
I’ve defended doctors quite heartily in my career to the extent that it got me in trouble on multiple occasions. Not only have I defended them with my professional reputation on the line, I’ve worked very hard to figure out how to make their lives easier. I’ve sat with the vendors of these portal systems and talked about how we could improve them. I’ve spent time with user experience/user interface (UX/UI) professionals talking about how to tailor to physician needs. I’ve listened to experts who study workflow processes and the related psychology to understand how these could be better implemented. I’ve listened to doctors about how these portals aren’t fitting their needs and are disrupting their workflow. I’ve sat with coders and entrepreneurs, investors and mostly with patients. I’ve written posts about how doctors shouldn’t be pushing paper (aka – the administration burden is limiting them). And I’ve spent an amazing amount of my time making my PHR fit their needs, to make it easier for them.
Yet I have not seen physicians afford patients the same respect, to invest the same amount of time without pay to help patients. So when someone writes and then another retweets that “every additional click inflicts a nick on physicians’ morale”, I am incensed. I am incensed because no one cares what those clicks do to patients’ morale. I am incensed because click thrus (the term used to capture how many times a user has to click on a drop down menu or select a button or click next) are not the problem here. Sure they are frustrating, but if they are that frustrating to you (and again it’s part of the job you get paid to do) imagine how frustrating they are to patients. But you don’t imagine that. Nothing I read realizes the burden that is placed on patients in managing their care, in dealing with their own click thrus.
When I read about the death of a brilliant young woman and a doctor replies that one of the issues is the “administrative burden on primary care” I want to scream bloody murder – literally. It wasn’t the administrative burden that killed Jess. It wasn’t the fact that it was too hard on doctors to do their jobs – it was that they didn’t do their jobs at all. Jess died in a system that isn’t connected, a system with multiple portals for multiple doctors that never connected. Jess died in a system where doctors were not willing to invest the time to coordinate care, to face the challenges that her rare diseases brought with them, to listen to patients, to spend the time and the effort to make sure she was getting the care she needed. Instead, they not only wasted her time, they wasted her beautiful and meaningful life. And from now on, every time I see that a doctor is complaining about administrative burdens, I will think about how excuses like that were what killed a good person.
The greater irony of that being all the work that Jess did in health IT professionally that her work was dedicated to better patient care and that much of it affects what those doctors do, those same doctors who complain everyday. And that when many people have been honouring Jess and all she has done in her short time, time that was stolen from her by the healthcare system, it is those very same people who stole her time that want my pity for the “administrative burdens” they face.
I will not use patient portals anymore because the burden is too high for me, as a patient. The burden in healthcare right now is too high for all patients and for all their caregivers. Jess, her family and her friends carried that burden for far too long when it was the providers who should have been carrying it all along.
I will not use patient portals.
I will not use patient portals anymore. I do not have to use them at all and I will not use them until many things are fixed. I will not use them until they decrease the burden on me. I will not use them until they have the functions I need for my care – until I can email multiple providers at the same time without a character limit and with the ability to attach files. I will not use them until I can feel that my doctor is engaging in my care and not just the nurse that reads and responds. I will not use them until they stop wasting my time with multiple logins and until they keep the power of my records in my hands.
I will not use patient portals despite the pressure from doctors who use excuses like their inbox is too full or it takes too much time to use email or that it is too much of a burden on them.
I am tired of playing by the providers’ rules – what they want, what works best for them. It’s time that this work best for me as a patient And I’m going to take the initiative to start making it work for me.
I think I’ll start by emailing this to all my providers.
Nothing in this post is meant to be construed as legal advice.