I’m Giving Up on Patient Portals

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.

Push Back

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.

1. HIPAA

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.

2. Security

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.

Character Count:

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.

Attachments

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.

5. Privacy

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?

6. Incompleteness

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.

Excuses

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:
chokshi tweet

lesli lord tweet

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.

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11 Responses to I’m Giving Up on Patient Portals

  1. ebukstel says:

    Reblogged this on Edward Bukstel.

  2. Nice post Erin. You did a fantastic job of articulating the challenges facing patients using the current generation of patient portals.

    I’m a primary care physician and have been using electronic communication of one kind or another with my patients since 1991. In 1998 I co-authored the very first guidelines on using e-mail with patients (this and other resources at http://e-pcc.org). And in 2000 I was part of the team that developed and implemented with one of the first patient portals at Beth Israel Deaconess Medical Center.

    I have been writing and speaking about both the challenges and opportunities of patient portals for many years, both from the health care professionals side and the patient side. You are spot on in identifying why interacting with some portals can be so frustrating for patients.

    You didn’t mention yet another challenge: portals that lack functionality or have terrible user interfaces (my own physician has one of these).

    However, some of what you identify are not necessarily inherent in portals–they are just a function of how practices choose to implement them (or how developers design them). Some examples include word count limitations, permitting attachments, and how messages are routed.

    Acknowledging that, I wish to point out a several reasons for insisting that my patients use our portal (and remember that I used ordinary e-mail with patients for almost a decade before we had a portal).

    1. Record management. Our portal messages are part of the record and e-mail messages are not. Therefore unless someone copies and pastes messages in the EHR there is no record of them for me or other members of the care team to reference. Processes that require humans to remember to do them are prone to failure and that is not acceptable when it comes to my patients’ health.

    2. Patient identification. E-mail messages are not identified with a patient ID so I may not know which patient is sending the e-mail. This can lead to misunderstanding and medical errors. In my e-mail days I required patients to include their record number in the subject lines (see this, which I stamped on the back of my business cards).

    3. I don’t know about you, but I miss e-mails all the time, even some that are important. Again this may be acceptable for most messages, but when it comes to clinical communications it is not. Having a dedicated system to manage patient messages ensures that they will not be lost.

    4. A related issue is that if messages are in a portal then we can have systems in place to track messages that are awaiting a response and send the appropriate reminders. This can’t be done with e-mail.

    5. Finally portals may have workflow tools, for both patients and health care professionals, that improve workflow and make it easier to create relevant messages.

    I’m writing not to say “I’m right and you’re wrong” (we do that too often in health care), but to help you understand more of the physician’s perspective. I think we’re both right. It is incumbent on developers to create the kind of portals that patients find useful. It is incumbent on practices and health systems to implement portals in useful ways without hamstringing the patient’s experience. And it is incumbent on all of us to figure out a better path to interoperability to solve the “multiple portal” problem.

    We need to do better for our patients (and for our physicians).

    Lastly, I was surprised to see that you’re not a member of the Society for Participatory Medicine, a non-profit membership organization that I co-founded and for which I am priviledged to serve as co-chair. Join us and meet folks from across the health care continuum that are working to solve these problems.

    Thanks for your post.

    • I’ll start with the last first. I was a member of #S4PM for a little while. I had to get a waiver because I can’t afford membership and it wasn’t something I got a lot of benefit out of. I do bery much appreciate what the organization does and have great respect for it’s members who I know.

      From there, I’ll say that I kind of knew this would happen – doctors telling me that I don’t know the physician perspective. Please re-read and realize how much time and energy I’ve put in personally and professionally to seeing the physician side. I of course am not a physician and cannot truly know what you experience, but I guarantee you I have done everything in my power to see it from your side. As I wrote, I haven’t seen providers do the same for patients.

      Now for the reasons you “insist” patients use the portal. I believe I have addressed them in what I wrote, but I’ll go through them again.
      1. See under “Excuses” the second point I make. It takes you more time to make an email part of my record. That’s an excuse I don’t by. It’s your responsibility to create and maintain the record. I’m sorry (not really sorry) that it will take you more time to copy and paste.
      2. If you can’t identify a patient by name, you have much bigger problems with your patient management. I am appalled to think you can’t figure out who is sending you an email and that you even ask a patient to remember and attach an ID.
      3. See again under “Excuses” but the first point I make. No other profession gets to make this excuse. If I did, I’d probably lose my license. This is your job.
      4. If you have poor email managment, that is not the patient problem, that is something the doctor needs to work on.
      5. I’m not sure what you call a “relevant” message but I have not found portals to work in MY “workflow.” My life shouldn’t be considered “workflow” because my life is my life. Doctors have workflows because they are at work, work they get paid for. My life should not be work.

      As for what is and what isn’t inherent in a system, I could have gone into more detail about how doctors choose to use them, I didn’t think I needed to write so much more right now, but here goes. Yes, doctors can choose whether to have character limits and what they are – most do choose to set limits and most of those limits are very small. Point being I don’t want any limits and I haven’t met a provider who allows that as an option (probably for their convenience because they claim they don’t have enough time to read more). That is just one example of how doctors set the portal up for their practice. But the problem is, many times the doctors don’t even know how to set those defaults or change them and aren’t willing to contact the vendor for help. I have literally had an office tell me they wouldn’t contact the vendor when I reported a problem with the portal because they had “spent enough time” on me. If they aren’t willing to work on the portal, I’m not either.

      As for functionality, it’s another point I didn’t delve into depth about but gave a nod through mentioning UX/UI. That’s a longer discussion but I think it’s also wrapped up in all of my points that include logging in and out, not having the features I want, and the click thrus. There is more to it, but this wasn’t the post for that.

      I am very glad that you work on this issue and that you are speaking about it. I’m thankful that you read this and wanted to engage in discussion about it. But I am also frankly annoyed (and thus probably come across as rude in response) that the entire point of this post is about how the portal affects the patient, and to some extent how physicians are failing patients through their use, and the response is how the portal affects doctors. This is NOT about doctors. I’m tired, oh so tired, of hearing how things affect doctors. As I said, I’ve spent a lot of my career and my personal time thinking about how doctors are affected – more time than you will ever really know or respect – it’s time to start thinking about patients. Just patients.

      I’ll say it once more for emphasis. This is NOT about doctors. This is about patients.

  3. I hear you, Erin. I know it’s about the patient–but there are other consideration on the physician side that have a bearing on how patients get treated (or not), which is why I responded to your post. Patients like yourself are often struggling with many health issues and many specialists. Physicians have to manage 1500-2000+ patients, each with a multitude of problems. I’m just arguing that we need systems that support both sets of needs and don’t allow patients to fall through the cracks or suffer through poor system design or implementation.

    • Danny makes some very relevant points, keep in mind that doctors have to do this all day every day so helping facilitate their workflow leads to improved patient experience. The vast majority of doctors have their patient’s interest in mind, and in an ideal world they would have time to better manage their email, their patient lists and communication with their colleagues, but the reality is they need to make many decisions about many patients with often lack of information. Portals, when properly implemented and used can make this better, but we are still in the early stages of developing systems in healthcare and we need to work collaboratively to develop them.

      • And do I make some very relevant points?

        Keep in mind that I have to be a patient all day every day, without a break, without the ability to leave it at an office. Patients do this all day every day and most of the patients (unfortunately not me at this time) do it on top of a job – in other words, they’re doing 2 full time jobs – one of which is far beyond full time.

        Again, as I’ve pointed out, I’ve fought for doctors. I’ve done that because I believed they had my and all patients’ best interests in mind. But, as I will say again, doctors have not afforded me or my fellow patients the same respect. Doctors have not fought to make patient’s life easier to the same extent.

        And finally, I will never buy the argument that doctors can’t manage their email just like the rest of us. I have to make decisions about many clients with often lack of information. Lots of people do so. Doctors are not unique in having to deal with email. When Danny says he needs a number to identify his patients who email him – that alone says everything that is wrong in healthcare – not least among them that none of the care is patient-centered.

        The point of my post is that the world is not ideal and that we are still in the early stages of developing systems. But they aren’t being collaboratively developed. By implying that patients don’t understand what physicians are experiencing these comments, you aren’t even starting the discussion. You want us to see your side. Now see ours.

    • Isabel says:

      Some excellent points are made on both sides of this lively conversation. But I think the underlying point needs to be made that health care providers are in a profession of their choosing while patients are dealing with health conditions not of their choosing. The onus should be on the health care providers, the system creators, the managers and the staff to create and maintain a system that eases the burden on the patient. Not the other way around. My 2 cents (incidentally, I have no access to any portals or EHRs where I live).

    • I apologize I thought my comment on this posted yesterday and realized it did not.

      I do really appreciate your willingness to engage in this discussion and your words of support for what I’ve written.

      We can both agree that systems need to do better to not allow patients to fall throught he cracks or suffer as you say. I think we are ultimately on the same side and fighting for that kind of change.

      However, I’m going to caveat it with a but just as your first line of your reply here, you are making this about the doctor again. Most of the patients I work with, perhaps not all in the healthcare system, do acknowledge and respect the work doctors do. We realize that you have high case loads, we hear the arguments for payment reform and we hear about the burdens you feel you face. And yet, as I said, the same consideration is not given us. I feel like in saying that you are managing 1500-2000 + patients you are assuming I don’t recognize your efforts while at the same belittling my efforts because I am only one patient. And what breaks my heart is I don’t think you can see that’s what you are doing.

      I do believe you want to help healthcare. It’s why you choose your work despite obstacles, and even more so it’s why you engage on twitter and in reading & commenting on a patient’s blog. I very much believe that you want to see changes as much as patients want to see changes. I believe that you are thinking, and it is why I fought for doctors for so long, that if we ease the burden on doctors – through better portals, through reducing administrative tasks, etc. – that they can do more doctoring as it were, they can help patients more. That is why I’ve written previous posts on this issue, that is why I’ve spoken up and risked my professional reputation on several occasions, that is why I’ve spent so much of my career and my personal endeavors on doctors. I want what you want.

      But as I’ve just posted, this time it needs to be about the patient. I need to do what is easiest for me because it is easiest for me. I am probably coming off as rude because this time I don’t want to give doctors any leeway. I am not going to be sympathetic this time to how big your caseload is. I have always considered how big your caseload is – it has personally affected me since even before I was born as my father was a physician and my mother a pharmacist – heck, I had just as big a reason to care about case loads long before I was chronically ill, that I just wanted my parents to be happy and content and not burnt out from the demands of their job. Please believe me when I say I HEAR YOU, I HEAR WHAT YOUR STRUGGLE IS AND THE BURDENS FACING YOU. I really really do.

      What brought me to this post and what irks me know is that I do not feel heard with the same due respect. This started with an email to providers and providers either firing me or telling me how hard their workload is. The impetus to write this was further a reaction to the loss of a friend who wanted from her providers the very same thing that I want from my providers – the same things I wrote in my letter. And instead of kindness and understanding I was given the excuses enumerated above – HIPAA, security, their burdens on time, their email inboxes being full. Only 1 of 16 providers wrote back and said – I hear you. The rest wanted me to email them when the email wasn’t working and my care was falling through the cracks in the same way Jess’s did. The rest were offended when I said that the email wasn’t working and again came back with the excuses – HIPAA, a full email inbox, etc. It was about them, about what works for them when I made a strong argument that as the patient it wasn’t working for me. And instead of catering to what they needed, which is what I’ve been trying to do – trying to be compliant and helpful and the perfect patient, undergoing every test and procedure and appointment as I wasted my time and my life and my mental health that was already so fragile – I asked to do it differently. I asked to have them recognize the issues for me rather than them making it about them yet again.

      You and I both want better care. But the realities we both face in dealing with the system as it is now are very different. I have heard the issues doctors face. I hear them constantly. Maybe you say you hear the issues that patients face but you don’t say it out loud in a way that just acknowledges the patient. You say “I hear you but…” when it needs to be “I here you.” You say we want the system fixed for our reasons (administrative burden, etc.) not we want the system fixed because we see how hard it is on you (multiple logins, limitations, care coordination, etc.) You say that you ask the patients to do more work (add their patient identifier in the subject line) because it would make your job easier – not because it would make my life easier. You say that you don’t want to copy and paste an email in my file, but would you respect that if I do use the portal I have to copy and paste it in 16 different portals? Is your time of copying and pasting it one time worth more than my 16 times of logging in to different portals and copy and pasting it for each individual doctor?

      The answer to the post shouldn’t have been an assumption that I don’t understand the onus that falls on your shoulders. I tried very hard to say I hear the onus that you say you are facing but here is what I am facing – how the onus that you claim negates the onus I on patients. The response should not be about how hard the system is for you. Rather response to the post should be saying that you see how it might be hard on the patient and maybe sometimes we need to find unique solutions that work for each individual patient (mine being the need to use email). Period. No “but this is what we are facing” or “this is how we experience it from our view.” Because this isn’t about you this time. This is about the ways in which patients reach out to communicate their health needs and how doctors push back with their own excuses. And every time you start a sentence with “I hear you … but” you are really saying “I want you to hear me first.” I’ve heard you before. Please hear me now. Period.

  4. Erin, your points are equally valid and the only way we can improve healthcare is in partnership. Sharing our thoughts is a great way forward, and co-developing solutions that benefit all parties involved. It is a journey which we have to commit to.

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