Addressing the disparities in those using patient portals

My institution recently switched from its home-grown electronic medical record (EMR) to EPIC, a system for which many great things have been promised. Indeed, it is a considerable improvement over the past one. A number of hopes have been pinned on the latest-generation EMRs, not the least of which is the idea that finally, with this newest generation of tools, a nexus can be created and sustained among comparative effectiveness research (the branch of medical science that asks which treatment are better and why), clinical care, electronic records, and patient-reported outcomes.

very recent article by my senior colleague in the School of Public Health, Albert Wu, and colleagues, traces the genealogy and current outlines of this nexus — and advises what might be necessary to move this opportunity forward.

One point he doesn’t raise in his article, however is which patients are actually using such EMRs. I was talking to a colleague the other day, and asked him idly what proportion of our patients had “activated” the code they were sent to access their patient portal into the EMR.

“Twenty percent,” he sang out, and then, perhaps noting my shocked expression, quickly added, “But that’s good!”

I don’t know how good that is, but for whatever reason I can’t find much recent scientific literature on the prevalence of patient activation of such portals in recent years. However, a study conducted in New York City in the year 2010 published in the Journal of General Internal Medicine presents some interesting figures. Namely, that 16% of all patients in the study received an access code, and of these, 60% activated their code. Disparities were noted: those who activated their access tended to be whiter, English-speakers, and with private insurance.

Similar reports are available elsewhere, though not seemingly from much more recently (as always, I would love getting updates and will happily correct in this space.) The question remains: In any given practice, how do we make sure that the patients who are actually using the EMR faithfully reflect the composition of the entire population?

If we do not somehow make these portals widely available, without disparities or inequities, we risk doing what doctors have always done: thrust health interventions at their patients without regard for accessibility or patient-centeredness, and then act cynical or walk away when patients do not snap it up with alacrity.

Zackary Berger is a faculty member of the Johns Hopkins University School of Medicine, where he is an internist and researcher in general internal medicine.  He blogs at his self-titled site, Zackary Sholem Berger, and is the author of Talking to Your Doctor: A Patient’s Guide to Communication in the Exam Room and Beyond.

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  • Suzi Q 38

    I would use it.
    My hospital just keeps talking about it, rather than implementing it.

    • Zackary Sholem Berger

      thanks for your comment! Curious to hear: how do you think such a portal would be useful to you personally?

      • Suzi Q 38

        Isn’t this my EMR on the computer, ready for me to read and access? Can I read what physicians have written about me, so that I can be better prepared with questions for my next visit? Can I make sure that certain specialists have put in the paperwork for my referral to a much needed different specialist? Can I print certain visits so that my second opinion doctors have hard copies sent to their office to review before I come in for my appointment?
        Also, this would be far easier than dealing with the hospital employee who says I have to turn in this authorization by MAIL before I am allowed to order copies of anything. They too, make errors and photocopy reports I did not ask for, and do not photocopy reports that I have asked for.
        This way, I know if I have it or not.

        Can I report a concern that I have about my treatment in the hopes that I can be put in touch with the right individuals who would more efficiently initiate the right care for me?

        Can I write an email to my physician, and would he/she actually be required to respond?

        Thank you for your interest.

        • Zackary Sholem Berger

          Very interesting. I note that your criteria overlap with, but are not the same as, the standards for “meaningful use” that EHRs are now required to meet per the Federal government.

          • meyati

            Then, I pray for thee to enlighten us on what is required by the Feds? My portal in my EHR does do most of what Suzi Q is asking for. The doctors in the network are required to reply to me by 48 hours, unless I put -No reply necessary- I did think that it was important to say that my post radiation treatment CAT scan w contrast showed that all the incurable cancer tumors are dead-but U don’t need to reply. All did anyway.

            Everybody can see my medication list, helped when I was hospitalized for a dog bite that ER bungled. They had a complete list of my chronic conditions, a list of my physicians, including my dentist. There is a list of Urgent Care and ER visits.

            I get notice of an appointment cancellation. I’m able to get online on weekends and make an appointment. I used to date a medic sans frontieres, and we’re still friends, so I asked him to look over my TSH labs. He said that I needed a new doctor. The following week, a cardiologist said the same thing. Thyroid symptoms can mimic some heart problems, besides doing heart damage. I have a new PCP that specializes in thyroid disorders.

            Unlike Suzi, my doctors send reports to each other if they’re on different systems. They work as a team, even if they practice in different parts of the city. But most of what they need to see is on my EHR.
            My Portal gives me dignity, because I don’t sound like a whiner that needs a shrink or get a life. That might not be on the Feds’ list, but it’s very important.

      • meyati

        I know that my PCP does know, and if not, I have proof. My military health records were lost long ago. Read my comment above if you care to make sense of this. That suites me personally.

    • meyati

      Tell them that they are breaking federal law. I did, some others did. Now I nag them into making it useful, e.g. including Urgent Care and ER visit links. @ Zack Berger- It helps my PCP to know what in the world I”m talking about-like atypical acute strep-temp 98.4-no visible inflammation at a network Urgent Care I was tested at an AFB and Ft. Bliss to see if I was a strep carrier. My PCP said that I was confabulating again. I had the darn stuff for 3 months. At first I thought that it was the flu.

  • Zackary Sholem Berger

    Many do. Many don’t. I see a lot with plain-vanilla cell phones.

  • HealthMessaging

    My personal physician just recently initiated an EMR and patient portal. While I am appreciative of his efforts…my experience trying to actually do anything on the patient portal was disappointing.

    In fact I wrote about my experience on my blog Mind the Gap wp.me/p3Dxul-13z – The tilte is “There’s Nothing Engaging About My First Patient Portal…It’s Actually Pretty Disengaging.”

    Steve Wilkins, MPH
    Mind the Gap
    http://www.adoptonechallenge.com

  • southerndoc1

    Before we mandate a massive transfer of funds from health care to the patient portal vendors, do we have any evidence that use of patient portals improves patient health or increases lifespan?

    • Disqus_37216b4O

      Yes, has anyone considered that the reason a lot of patients are not using these patient portals is because they see no value in it? They’re just not interested? Maybe they’re not all dummies or disenfranchised “victims”; maybe a lot of them are intelligent functioning adult citizens who have done a cost-benefit analysis in their heads and decided, as with frequent buyer programs and electronic Starbucks cards, it’s just not something they’re interested in investing their time in?

      • Zackary Sholem Berger

        Indeed. Patients don’t always want what they are “supposed” to want. And EMRs are not patient-centered just by virtue of meaningful use. I go into detail on this point in the book.

    • Zackary Sholem Berger

      There is some evidence that for patients with multiple comorbidities, EMRs can improve outcomes. I think the evidence on patient portals is probably limited because they have only recently been implemented. But I might be wrong.

      • southerndoc1

        Thanks for the reply.

        “the evidence on patient portals is probably limited”
        And that’s my point. How much of our limited resources of time and money do we want to spend in forcing on patients an intervention of unproven worth? I think the evidence of benefits from EMRs is quite skimpy, but we’re all familiar with the phenomena of hospitals laying off nurses to pay for IT, and doctors reducing the number of patient visits because of the increased time burdens of same.

  • http://onhealthtech.blogspot.com Margalit Gur-Arie

    I would think that if we want to address the disparities in patient portal use, we actually need to resolve the disparities themselves, instead of customizing patient portals to function at a 4th grade literacy level on a flip phone for those suffering from “disparities”.
    Somehow, I think if we go that route, better outcomes will be a foregone conclusion….

  • Disqus_37216b4O

    Because both of my parents are patients in the Mayo system (Mayo Primary Care, Mayo Health Campus) in Florida, I recently asked them what they thought of the Mayo Health app (they both have iPhones) and the patient portal.

    Neither one of them has even bothered to download it.

    And they are not scared of apps, not technophobes. My Mom does all her banking, including depositing checks remotely, via a banking app, my Dad is a sailor and hooked on astronomy, navigational and weather apps.

    They just see no purpose in it. They’re not sick, and “medical stuff”, beyond the annual flu shot and physical, is just not a significant part of their lives. Fair enough! I’m sure that if/when something comes up and they start having more encounters with the medical world, they’ll go ahead and get into the “patient portal experience”. But until then, it’s like asking someone who isn’t interested in baseball to download and use regularly an MLB app.

    • http://onhealthtech.blogspot.com Margalit Gur-Arie

      This is exactly the “problem”. 50% of people use almost no health care services, so turning everybody into a hypochondriac may not be so cost effective as it seems to people interested in research.

  • FriendlyJD

    Doctors who offer patient portals need to actually use and update them if they want patients engage with them.

    I have a genetic condition for which I see quite a few specialists. I
    was excited by the idea of patient portals and, initially, activated all
    of them. I quickly learned that absolutely none of my doctors use them
    for anything other than collecting bills. The sections that contain my
    medical history, visit summaries, medications, and test results are
    consistently blank. As a result, when I got the code information from
    my newest doctor a few weeks ago, I just threw it out.

    I was hoping I could use my portal to stay on top of my condition and
    print out lab results and visit summaries to bring to my other doctors,
    but, no. I still have to call and request my records be faxed over or
    pay for them to be mailed to me to I can ensure my other doctors have
    them.

    So, while I agree when need to address disparities in their use, I think we should maybe first focus on making them useful.

    • azmd

      The problem is that no one appears to be entirely sure where the funds are supposed to come from to pay staff to update the patient portals…

      • meyati

        Hey they write on something anyway.

  • guest

    I am a patient at Johns Hopkins. I am afraid I have to expose my ignorance as I don’t know what a portal is. The only thing i remember about this is calling the surgeons office with an important question only to be told that everyone including the secretary were busy learning the new EPIC system and they were not available, They were treating a more important pt. THe EPIC.

    • Zackary Sholem Berger

      The EPIC transition is certainty a major undertaking. The “portal” in the EPIC/JH version of the EMR is MyChart.

      • guest

        What are the benefits for a patient with the portal or my chart? Is it simply being able to read the physician notes? It is not something i have been made aware of which is interesting given how much money and time obviously went into it.

        • Zackary Sholem Berger

          In the Hopkins setting, the patient can view their results and images and communicate with doctors (and other providers) directly. At our institution we do not yet have “open notes” set up, so I don’t think you will be able to view those. I think we *should* do that, but we’re not there yet.

        • azmd

          If you are admitted to a hospital which uses EPIC, upon discharge you should be given something called an “after visit summary” or AVS, which will include directions on how to access your test results and contact your doctor through MyChart. Some hospitals are also making chart notes available for patient review through this portal.

          You may also get an AVS after an outpatient visit, but I wouldn’t know about that.

          • guest

            thank you very much.

          • meyati

            I get the after visit for everything, it’s just that I have an American born-raised for many generations that can’t write anything that others can read. When he does write, he says what he wants, which doesn’t help. As of Monday he became my X doctor.

  • Zackary Sholem Berger

    Good point. I have to ask the EPIC folk at JH if there is a way to view our EMR from the patient’s POV, i.e. with a “patient emulator” to see what it looks like in various environments.

    • meyati

      I plain vanilla cell. Some students couldn’t bully me into a passing grade or whatever, and they told their parents that I was taking crotch shots and/or texting about them 2 other teachers. I handed them my plain jane vanilla fuddy duddy dumb phone. Then I pulled all of my pockets inside out. Next I just opened my drawers and dumped them on the floor, along with my daily packs that I used to carry the teachers’ text books, etc. All of the time, the students were cracking up, and shouting, “Miss is too old 2 have a smartphone” and more somesuch. I think that at that point they realized that their sweetie pie honey boo was the only problem -not me. The student usually had a better work ethic for the rest of the semester.

      I prefer to have a PC and a NEXUS 7. They interface just fine I taught math and computer science. I love 2 do PhotoShop and graphics. Somehow a smartphone or even my tablet aren’t suitable for that, as I’m talking about much more than cropping. My PC OS is also suitable for hypertext.

      I’ll be honest, I mostly use my Nexus to game and keep track of appointments-my son is a disabled vet that needs to go to the VA quite often. Then Missy, the coonhound, that you see 4 my avatar, killed a cat, and caught some skin disease on her ears during the fight.. So, that has to be scheduled in too. by the way, if you love your kitty-keep it in or teach it not to go in a fenced yard with coonhounds.

  • WWWeaves

    Dartmouth recently switched to EPIC as well. I wonder how they are liking it.

  • buzzkillerjsmith

    Techie: If we can do it , we should do it.

    Doctor: If we should do it, we should do it.

    Patient: Did someone do something?

    • https://www.facebook.com/arobert6 Alice Robertson

      Were doctors compensated for initiating this? And don’t patient’s overall like it? It certainly will help in preventing errors. Buzz I can’t answer you on the other thread. You misunderstood the intent. It’s too much effort to keep trying to post when so many end up moderated and deleted.

    • multifariousm

      I disagree with this characterization as both a patient and a hospital administrator. As a patient at a local academic medical institution I use mychart to review my test results, pay invoices, request medication refills, and check for pending appointments. So, while this is great for me, as an administrator, I think of it as great for physicians, medical centers and techies. By my viewing my own test results online, I’m saving the institution either a call or a mailer, same for reviewing and paying my bills. By requesting my refills online, the practice can deal with it on there schedule versus it getting lost in a sea of messages.

      • https://www.facebook.com/arobert6 Alice Robertson

        Amen!:)

  • azmd

    Gee…maybe patients are really not that interested in “patient portals?” Or maybe the existing patient portals are not as user-friendly as the designers would like us to think?

    Speaking as a patient, I can say that my attempts over the last four years to access my kids’ accounts through our pediatrician’s user portal have been nothing less than frustrating and fruitless, due to poor design which renders it time-consuming and ineffective to use.

    • meyati

      My patient portal wasn’t user friendly. What got me is that they had a special site-sign-in for family members to look at the patient’s EMR. Then the whole site changed passwords every quarter. Lovely. I don’t know what a family member saw, probably not much, if they were able to get past the password problems. I got connected to the techies again with my complaints on how stupid the family member account was. They said that if I had family, I’d want them to use it. I told them that if I wanted them to look at my records, I gave them my user name and password, and they saw everything I saw. I couldn’t be the only person doing that? Just how stupid are you? I used to date a French medic sans frontieres. We’re still friends. I asked him to go over my thyroid screens and whatever else he wanted. He recommended that i get a new doctor.

      I had several drs make comments that I seemed to be one of the very few patients that used the portal. I pointed out the password problem. I asked my famous question-how secure is a password if you have to buy a notebook and write down each password, cross it out, and write the new one and have pages of that? One of my complaints about this is that even if you have only one password book available, it shows your method of choosing passwords, and that could be used to hack the bank accounts. A patient doesn’t need to have a chronic condition to use a patient portal and be frustrated by constantly changing passwords.

      You can have the flu and want to talk to the doc or review what was said at the urgent care or ER and be completely frustrated. How does a constant password change benefit someone that has vision problems or conditions that make it hard to write small? Are they supposed to use a Sharpie and write on the wall? One doctor went into a rage, and said he’d get the other network doctors on this, as the constant password change was ridiculous. It looks like the doctors were successful.

      Techies should be told a password, and then partially blind-folded, their hands restricted, and let them smoke pot for hours, and then told to enter a site with that password. To help them out, there’s a 30 gallon trash bag filled with paper scraps, and the password is in that. If allowed to use all keys such as the “+”, the “=” many people could come up with a suitable password. On sites that allow that, I have killer passwords, and the techies don’t make me change, because they haven’t broken them.

    • Suzi Q 38

      I am interested. I think they will be used more and more.
      Hopefully they will be easier to use than your pediatrician’s portal.

      • https://www.facebook.com/arobert6 Alice Robertson

        They will get easier. It’s great that technology is empowering patients, which is a real problem for a segment of doctors stuck in the past or who preferred that old metaphor of the secret veil in medicine. In the last four years patient access has gained immeasurable to the point that we get info in days that took weeks before. Oddly though the docs here use electronic communication to dislike patient posts with an urgency that makes a patient say….what (?) wish you were that busy at uploading my records:)

  • StefanoNBelinda

    I just made an appointment with a new doctor who has a patient portal. While I like the idea in theory, I found the particular portal he is using to be very non-user-friendly, and in fact was not able to access the questionnaire onto which I was to enter my medical history. I’m no technical wizard but I should have been able to do that without a hitch.
    Many people, especially older people who NEED access to their doctors are still not able to navigate computer-based systems. Poorer people may not even have computers (yes, in this day and age.)
    Whom is this supposed to be helping?

    • https://www.facebook.com/arobert6 Alice Robertson

      The poor people I work with use their cell phones to access it. You need to call them and complain because they use feedback and tweak. It’s important for patients to work with this because you may catch an error your doctor misses (my daughter’s cancer would not have spread if I could have seen her lab report the doctor didn’t read).

      • meyati

        My ophthalmologist’s clinic has a patient portal that’s not connected to anything. They gave me my number, it didn’t work, didn’t even have the correct amount of characters. I taught HS math and computer science.

        I called, and I was told to go to the office and see the receptionist. It wasn’t even the correct site. I wasn’t happy. The office I needed to go to was almost a mile away.

        I’m developing cataracts, and it would be nice for documentation 2B provided to other providers.The office is attached to a network hospital, and is a main network provider. It seems that even if a different system is used that they could have links.

  • multifariousm

    With regards to reaching an expanded demographic, this is something my massive county academic training hospital is dealing with. We use epic, so have Mychart.
    All of our target population are low income and half are Spanish speakers.
    Question 1: Can they use it? Yes, most use smart phones as their primary internet access point and it works on a smart phone.
    Question 2: What is our main goal by implementing this? This is our struggle. Others use it to empower their patients with data and self service tools, even offload work by allowing patients to pay bills online and make appointments. We, however, have a patient with an average English or Spanish 2nd grade education level. Just giving them access to test results isn’t meaningful.
    Question 3: Can we handle it? Our residents don’t own their patients from visit through followup. Who is going to handle the myriad of provider questions, refill requests, etc.

    • meyati

      I can choose for a lab work to be graphed. A bar graph is a good visual for a date specific lab. A line graph is good for the history of a specific test, e.g. anemia, cholesterol. While oral communications-making appts and other phone communications are in either English or Spanish, and having translators for in person interactions, many Spanish speakers are illiterate in reading Spanish.

      My health care system conducts seminars about health and provides tasty healthy snacks. Maybe a patient portal seminar could be conducted with a drawing for a prize or 2 for incentives. I’m sure the health system could find some sponsors.

  • guest

    Within this whole discussion of some 40 something posts lacks the issue of privacy. Lots of talk about how EHR’s may be used. But how about the fact that we are being used as patients?

    HIPAA allows for our medical information to be sold to marketers for tons of money. The oxymoron is we are not the consumers of this technology. We are the ones being sold for a price.

    • https://www.facebook.com/arobert6 Alice Robertson

      I didn’t know HIPPA allows the information to be sold? Can you send a link? Hey, I am more worried about gmail selling my crazy late night emails than my health information getting loose on the internet. I wake up and wonder who is that nutcase who sent those emails on my tablet:)

      Are you talking about PHR’s that aren’t under HIPPA? I am thinking you are sharing that it’s sold in a generic NSA sorta fashion? Not truly personal and identifiable? Of course, using our computers to type or read these posts, cell phones. and charge cards are all pretty risky behavior as far as data breaches.

      • guest

        Sorry don’t have a link but if you look carefully at the posts under the Hidden costs of EMR systems by Elizabeth Hipp that was here a few days ago, i will repost the comment below by MKC.

        “Here is a quote from David Harlow at HealthBlawg:”The data privacy and security concerns
        surrounding the transfer of de-identified data are significant. To “de-identify” what is otherwise protected health information under HIPAA, some outfits will simply strip data of 18 types of identifiers listed in federal regulations. However, the relevant regulation also provides that this only works if “the covered entity does not have
        actual knowledge that the information could be used alone or in combination with other information to identify an individual who is a subject of the information.”

        “Thus, the problem with this approach is that, these days, nobody can disclaim knowledge of the fact that information de-identified by removing this cookbook list of 18 identifiers may be re-identified by cross-matching data with other publicly-available data sources. There
        are a number of reported instances of this sort of thing happening. The bottom line is that our collective technical prowess has outstripped the
        regulatory safe harbor.”

        The thing that amazes me, which I’ve just had my memory refreshed on, was that the patients weren’t suing Walgreens because they felt their privacy had been breached, they were suing because they felt they deserved a slice of the pie! “The plaintiff group of customers is suing to share in the profits realized by Walgreens from trading in the de-identified data.” M.K.C.

        • https://www.facebook.com/arobert6 Alice Robertson

          Isn’t that something? Thank you for sharing. I think PHR’s (the sharing portals) are a problem because it’s bothersome they can gain without the regulation. NSA uses the cross matching as well, at least that’s what they keep telling us. I guess they will use this data too so pita bread buyers beware! Teasing…but….:) Anyhoo….Ta!

        • http://www.transcriptionoutsourcing.net/ Elizabeth

          Thanks for sharing, glad you liked my comments and my post =)

  • http://www.transcriptionoutsourcing.net/ Elizabeth

    I’ve found the patient portals to be a bit annoying.

    My doctor’s office put one in about a year ago. I was told about it when I walked in to check in, then was handed a slip of paper reminding me to sign up for it as I was leaving, to get my test results it said. I asked the front desk, if my test results came back abnormal or a sign of something bad, would they still call me? They said yes. So why would I want to sign on to a system that I knew would tell me nothing was wrong?

    The worst part was there was some sort of automatic call system they also installed to call me every couple days with a recorded message to remind me to sign up for the portal. After four or five calls I finally had to call my doctor back, and ask them to turn off these call reminders as I wasn’t interested in the portal.

    I agree with other people – if I had a chronic illness or young children, maybe I would be interested. But as a healthy woman who sees her doctor once a year, sorry not for me.

  • guest

    Elizabeth cannot thank you enough. But I am a bit confused. I thought that HIPAA already let pharmacies sell pr info to marketers ie third party non covered business entities. So how does this measure by CVS actually help them? They already sell the info. Right?
    If I am correct I thought it was interesting that the reporter made it sound like HIPAA was doing its job to protect. it was just the “bad” pharmacy CVS. I gather from reading your blog it is a lot more complicated than that.

  • guest

    Elizabeth, remember when 1984 was just a novel? definitely scary.

    Followed it so far. But now i’m a bit lost. Why is de indentified information more valuable and to whom? sorry if i am asking dim witted questions. Just don’t think like these people obviously do.

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