A “Bitter Pill”: Weighing In On Our Broken Healthcare System

An article in Time Magazine (titled “Bitter Pill”) recently chronicled the high costs of medication and other hospital services.

For those of us who are chronically ill, we know all too well that the financial costs of healthcare are extremely high, and can add a lot of stress to an already over-taxing situation.  So too are the emotional costs. 

It’s stressful when things don’t go the way you planned.  And I don’t just mean medications working the way they’re supposed to, test results, etc., I mean something as basic as procuring a prescription.  And it’s not just that these experiences are annoying.  They are unnecessary. 

Here’s an example:

When I started a new medication a few months ago, I was told that the prescription had been submitted to the hospital pharmacy where my rheumatologist’s office is.  I went to the pharmacy, and of course, they had no record of the prescription. 

I went up to my rheum’s office and talked to a receptionist.  I was informed that the prescription had been accidentally submitted to the student health center pharmacy, and that my doctor would have to redo the whole thing.

You would have thought I was a drug addict “jonesing for a fix”.  I’m not.  The problem was that there are very specific instructions for lab work that has to occur at certain times and at regular intervals.  To make it easier on myself, I had decided to do the blood work on Tuesdays, as I am already at the hospital to volunteer.  If I wouldn’t have been able to get the medication, I would have had to change my whole plan.

I called the student health center and they confirmed three things I pretty much already knew:

   1)      They could not fill this prescription because they do not stock the medication.

   2)     My insurance would only cover the prescription at a specialty pharmacy, which the student health center is not.

   3)     Because my doctor does not practice at the student health center, they could not have filled the prescription anyway, regardless of numbers 1 and 2 just mentioned.

So why did the system even allow it to get submitted there in the first place?

Ultimately, despite what I had been told, the student health center was able to call the hospital pharmacy and transfer the prescription over.  And I was able to get it that day.  But what started out as a 15-minute errand, turned into a nearly two-hour ordeal.

This directly speaks to the use of technology in the healthcare realm.  For the first time, patients are able to interact with their medical records and health information in truly amazing ways.  However, this technology has its pros and cons.  I talked about this at length in my post, “The Trials And Tribulations Of Electronic Medical Records And E-Prescribing* **”. 

As I suggested in that post, E-Prescribing doesn’t seem to work very well.  If you cannot get all of your prescriptions at one pharmacy, this is not something the system can deal with.  Similarly, the system defaults in ways that can cause the wrong pharmacy to be chosen or the wrong medication, wrong dose, wrong administration, etc. 

This technology makes doctors lazy.  They type stuff in without making sure that what gets submitted is correct.  And that’s what happened in this case. Because UMHS and UHS are very similar, my rheum thought he had selected one, when he had actually selected the other.

Then these things get sent out into the ether, and you only find out if there is a problem when you go to pick up the prescription and it hasn’t been filled for whatever reason.

And then it becomes the patient’s job to slog through the system to find out what went wrong where, and what can be done to fix the problem.

And since some insurance companies require different pharmacies for certain medications, drug interactions are a real concern, especially when the patient deals with four separate pharmacies for their various medications.

If that’s not stressful, I don’t know what is.  It means that the patient – who is often sick, tired, and unable to be a real advocate – really has to be on top of everything. 

On the one hand, you would think that it’s great to be an empowered patient with the technology that is available, but the way the system works has the opposite effect, and in fact, can be very disempowering. 

When obtaining a new prescription is like running a marathon, it’s very easy to want to beg out.  It’s overwhelming.  In some ways, the big things should be stressful, but these little things should not have to happen at all. 

I can’t imagine what it’s like for those who can’t do what I did or don’t have someone to do it for them, to hunker down and wait until the situation is resolved.  Not that I enjoy spending hours going on a wild goose chase, because I absolutely don’t, but I can.  I don’t take no for an answer.

It’s not easy to be chronically ill.  It’s downright stressful.  That’s why these “small” stresses brought upon by the healthcare system are so maddening.  Is it too much to ask for something to go smoothly, just once?  Yes, apparently it is.

Sometimes too much technology is a bad thing.  While, again, I do think that there are definite benefits to patients having so much of a direct connection to their health information, I also think that the system, as it currently stands, relies too much on technology that isn’t designed to deal with the nuances that come with having a chronic illness.   

Technology is supposed to make things easier, and maybe as far as healthcare is concerned, it does in the realm where healing time is quickened, procedures are made less invasive, things like that.  But in the realm that is the doctor, the patient, insurance companies, and the receptionists and pharmacists, it makes things more complicated.

Sometimes I want to scream, “Just give me a damned piece of paper.”  That’s an old-fashioned notion, I know.  But if I, the patient, could take the prescription to the correct pharmacy on the first try, it would certainly make things less stressful.  Or if I had that paper, and three prescriptions need to go to three different pharmacies, I could take care of that – and get it right – on my own. 

I think the most stressful part about this, however, is that in some ways, my life is in the hands of these people, and they don’t get it, they could care less.  The sense of urgency that I feel doesn’t register in their world.  So I take control.  I have to be my own – and best – advocate.  And yet, no matter how I hard I try, I sometimes find myself on the losing end anyway. 

Chronic illness is stressful.  And it would be nice if just once in awhile, one of the many people in the healthcare arena got it.  That they could feel your pain, or sense your frustration, and offer to lighten the load a bit.  But that rarely happens.  Instead, I’m stuck talking to technology that doesn’t respond.  I’m fighting a system that cannot be fought.  And while I appreciate the technological advances, I have seen firsthand, time and time again, the wisdom of a paper prescription that your doctor has to write out and sign.  That you agree to the terms and leave, prescription in hand, feeling empowered, feeling like the master of your dominion. 

Instead, I feel like a lame duck, like I’m stuck in a cycle of ridiculousness.  I leave feeling acutely that I’m chronically ill, knowing that my healthy counterparts deal with the system so much less often, and probably much more smoothly on the occasions that they do.

So my pills are a constant reminder of the struggle I face.  Even though they may be hard to get my hands on, I swallow them dutifully, albeit, even though they leave a bitter taste in my mouth, the remnant of fighting for my health and my life, in a system that seems to serve everyone other than the patient.

  

The Trials And Tribulations Of Electronic Medical Records And E-Prescribing* **

So, every once in awhile, I move away from posts that are extremely personal, emotional, and philosophical, to talk about the more practical aspects of being a patient, with some old-fashioned research thrown in for good measure.  

Electronic Medical Records

Recently, the hospital that my rheum and other specialists are at, and the student clinic where my primary care doctor is, moved to an electronic medical records system. 

At your first appointment after the system was instituted, you received an access code, which allowed you to go online and access your medical records.  You don’t have to, but for someone like me who is chronically ill, the possibility of having my medical information at my fingertips was very appealing.  So I signed up pretty much right away.

Until I discovered that there was an IPhone App I could download, I did not realize that the system I was using is actually of the “Vendor Created, System Hosted” variety (Halamka, et al. 2008).  This means that a third party created the system and the health system I belong to hosts it. 

In other words, Epic Systems, a company out of Wisconsin, created an electronic records system, known as MyChart.  This system has been around since the late 1990s. Along with Halamka, et al. (2008), Hassol, et al. (2004) and Serrato, Retecki, and Schmidt (2007) look specifically at the MyChart system.

Through the patient portal online, you can do a variety of things: request and cancel appointments, request prescription renewals, review health history, view immunization records, view test results, send messages to your healthcare team, and pay bills online. 

Here are some of my observations thus far:    

Likes:

-         You can create tables that compare past test results, which is useful to monitor certain levels.

-         I can e-mail my doctors’ offices, schedule appointments, cancel appointments, etc.

-         I get an automated e-mail when new results, messages, appointments, are posted.

-         Unlike before, both the hospital and the student health center can see records.  Before, only one could see all records and the other could not, which made things very tricky when you have a primary care doctor at one and all your specialists at the other.  This was a serious flaw in the old system, which I am grateful has been fixed.

-         Presumably no more having to pay money to get your hands on your medical records and test results. 

Dislikes:

-         I can only see my records/history from AFTER the system went into effect.  Presumably, the interface that my doctors use allows them to see the entire health record, not just since the implementation of the new system, but I am not certain of this, since I have never seen the system from the other side.

 

-         No one, in terms of doctors, knows how to use the system, which has increased the time of clinic visits by a significant degree.  It was instituted in the summer and there is still a steep learning curve, which I know has also been frustrating for the clinicians.

-         If there was some potentially devastating test result, would it get posted to the health record that the patient could interface with?  Or would it not be released until the doctor delivered the news to the patient?

-         I don’t kn0w what every test means.  I know certain levels and things like that, but not every test.

-         One of my medications is not commercially available in the United States, and therefore, was not in the database.  I was told the system would not allow the doctor to enter a medication not already in the system.  This seems like a huge liability, especially as far as drug interactions go.

-         There are some inconsistencies.  For one thing, the prescribing doctor on most of my medications is incorrect.  But there is no way to change things.  While you can interface with the medical record, as the patient, to my knowledge, you cannot manipulate it, even when you find things that are incorrect.

In their study, Hassol, et al. (2004) found that a third of people felt that their medical record and information was not complete.  Further, there was a distinct inability to understand tests results, especially abnormal ones.  Further, Hassol, et al. (2004) confirm my worst fears that patients can see any and all test results, even ones that are potentially devastating, before their doctor has had a chance to contact them about them directly.

One would hope that one benefit of having access to an electronic records system is that there would be greater coordination of care across specialists for the same patient.  However, this has been identified as one area that is lacking (O’Malley, et al. 2009). 

This is something I have noticed generally about my care, and something that I hoped would be improved by this system.  As I suggested, now all of my doctors in the same health system have access to my records, however, whether doctors put that information to good use is up to them.  Additionally, when I saw my PCP last week, she was very frustrated because there has been a variety of contacts (via phone and e-mail and through the portal) made between me and various doctors’ offices in the past month, and my PCP was having difficulty finding the last note she had made in my record when I saw her a month ago.

Negatives on a broader scope include electronic medical records widening the healthcare disparity based on race, as whites are much more likely to utilize these systems than are blacks and other minorities (Goel, et al. 2011; Roblin, et al. 2009).  Additionally, there are various privacy concerns due to the potential negative effects of the wrong people gaining access to electronic record information (Li, et al. 2011).

I have to say that I like the ability to e-mail questions, refill requests, and requests for making and canceling appointments online.  It saves me the hassle of going through my phone to find the doctor’s office number, of which I have many, and waiting on hold on the phone to talk to a person.  However, when doing things via the portal, this then puts the onus on the doctor’s office to contact the patient in regard to whatever message or request they have sent, rather than it being the patient’s responsibility.   

It may or may not be surprising then that Hassol, et al. (2004) found that patients preferred online communication the best, while doctors preferred telephone and in-person communication in preference to online. 

E-Prescribing 

Even before the adoption of the electronic records system was instituted in my health system, prescriptions went paperless.  Prescriptions are all electronic, so not only does the patient not have a paper copy of the prescription, but if there is an error, the patient won’t necessarily be able to catch it, because they don’t really get the opportunity to view the prescription that gets put into the system by the clinician.

I have had varying issues with this, as well:

-         My original Humira dose was totally wrong.  It somehow got listed as being taken twice a week instead of twice a month, necessitating the pharmacy to call my doctor to correct the error.

-         The prescription gets sent to the wrong pharmacy.  This has happened almost every time, and has involved me needing to contact the doctors’ offices to get the prescriptions re-submitted to the correct pharmacy.  Unfortunately, the way my prescription insurance works, I can’t get all of my prescriptions from the same pharmacy.  The “normal” ones I get at CVS, the Quinacrine I have to get from a specialty pharmacy that compounds, and certain other special prescriptions I have to get from the hospital pharmacy.  This system might be ideal for patients who are able to use one pharmacy for all their medications, but it seems to me that if you use more than one, it really complicates things.

-         It defaults.  So for the Humira, when I was trying to get the pre-filled syringe instead of the pen, it automatically selects the pen and the nurse or clinician had to notice this and change it, which didn’t happen, again necessitating contacting the doctor’s office multiple times to make the change.

I am not sure of the specific E-Prescribing system that is used by my healthcare providers, but whichever one it is, I have noted above the various problems that I have experienced.

While some have suggested greater efficiency with E-Prescribing (Agarwal, et al. 2010; Grossman, et al. 2012), E-Prescribing actually tends to take doctors longer than simply handwriting them (Lapane, et al. 2011), and can increase, rather than decrease, the amount of errors made that can have adverse consequences on patients (Palchuk, et al. 2010).

The thing I really don’t like about this system, with all of its flaws, is that there is no way to get a paper prescription.  Even when the prescription keeps getting messed up.  And there is no way to see this, because you never see what the physician is putting into the system.  I’m all for technology, but to be so technologically dependent, even when there are clear errors, is just plain annoying. 

A lot of problems in E-Prescribing occur when there is a lack of technical support (Crosson, et al. 2011), suggesting that adequate training of healthcare workers is needed, and adequate support needs to be provided when problems occur.

I’m not trying to be a Negative Nancy here, but of course, all of this presupposes that the patient has adequate internet access and is technologically savvy enough to use the systems.  And the doctors have to be technically savvy, as well, which may make it difficult to learn a totally new system while having a regular caseload of patients. 

If your healthcare providers haven’t hopped on the electronic health bandwagon yet, it is only a matter of time.  But given all of the issues that I and previous research has noted, the bottom line is that these systems are only as good as the people that created them and the doctors and other medical personnel that use them.

These are screenshots from my IPhone of the sign-in screen to my health system-specific portal (left) and the actual interface of the MyChart capabilities (right).  

These systems look quite different between the IPhone interface and the PC interface, so I have also included screenshots of the sign-in screen (top) and interface (bottom) as they appear on my PC.  Without showing too much of my personal health information, I wanted you to see all the various things you can do with the portal.

 * I’ve excluded from analysis articles that come out of the UK and Canada, as their healthcare systems, as they currently stand, are different from ours.

**For this I looked specifically at research related to electronic health records and E-Prescribing, rather than health informatics, in general, for which there is a large literature.

References

Adler, K.G. 2009. “E-Prescribing: Why the Fuss?” Family Practice Management (January/February) 2009: 22-27.

Agarwal, R, C.M. Angst, C.M. DesRoches, and M.A. Fischer. 2010. “Technological Viewpoints (Frames) About Electronic Prescribing in Physician Practices.” Journal of the American Medical Informatics Association 17: 425-431.

Crosson, J.C., R.S. Etz, S. Wu, S.G. Straus, D. Eisenman, and D.S. Bell. 2011. “Meaningful Use of Electronic Prescribing in 5 Exemplar Primary Care Practices.” Annals of Family Medicine 9 (5): 392-397.

Goel, M.S., T.L Brown, A. Williams, R. Hasnain-Wynia, J.A. Thompson, and D.W. Baker. 2011. “Disparities in Enrollment and Use of an Electronic Patient Portal.” Journal of General Internal Medicine 26 (10): 1112-1116.

Grossman, J.M., D.A. Cross, E.R. Boukus, and G.R. Cohen. 2012. “Transmitting and Processing Electronic Prescriptions: Experiences of Physician Practices and Pharmacies.” Journal of the American Medical Informatics Association 19 (1): 353-359.

Halamka, J.D., K.D. Mandl, and P.C. Tang. 2008. “Early Experiences with Personal Health Records.” Journal of the American Medical Informatics Association 15 (1): 1-7.

Hassol, A., J.M. Walker, D. Kidder, K. Rokita, D. Young, S. Pierdon, D. Deitz, S. Kuck, and E. Ortiz . 2004. “Patient Experiences and Attitudes about Access to a Patient Electronic Heath Care Record and Linked Web Messaging.” Journal of the American Medical Informatics Association 11 (6): 505-513. 

Lapane, K.L., R.K. Rosen, and C. Dube. 2011. “Perceptions of E-Prescribing Efficiencies and Inefficiencies in Ambulatory Care.” International Journal of Medical Informatics 80: 39-46.

Li, F., X. Zou, P. Liu, and J.Y. Chen. 2011. “New Threats to Health Data Privacy.” BMC Bioinformatics 12: 1-7.

O’Malley, A.S., J.M. Grossman, G.R. Cohen, N.M. Kemper, and H.H. Pham. 2009. “Are Electronic Medical Records Helpful for Care Coordination? Experiences of Physician Practices.” Journal of General Internal Medicine 25 (3): 177-185.

Palchuk, M.B., E.A. Fang, J.M. Cygielnik, M. Labreche, M. Shubina, H.Z. Ramelson, C. Hamann, C. Broverman, J.S. Einbinder, and A. Turchin. 2010. “An Unintended Consequence of Electronic Prescriptions: Prevalence and Impact of Internal Discrepancies. Journal of the American Medical Informatics Association 17: 472-476.

Roblin, D.W., T.K. Houston, J.J. Allison, P.J. Joski, and E.R. Becker. 2009. “Disparities in Use of a Personal Health Record in a Managed Care Organization.” Journal of the American Medical Informatics Association 16 (5): 683-689. 

Serrato, C.A., S. Retecki, and D.E. Schmidt. 2007. “MyChart – A New Mode of Care Delivery: 2005 Personal Health Link Research Report.” The Permanente Journal 11 (2): 14-20.