Getting & transferring a person’s health information: still slow and inefficient

I have been thinking again about people’s medical information recently.

First of all, most people have no copy of their own health information. Recently a family member went for an annual physical, and the clinician dutifully addressed the question of colonoscopy. My relative thinks she had one in the past few years, but the doctor doesn’t have a record, and no one is sure how to find it.

I told my relative that when they do locate the results, she should get a copy and keep it. And keep copies of her laboratory results too, for that matter. “Why would I do that? Doctors keep those things.” was her response.

Sigh. Hasn’t she noticed how often doctors can’t find something, or don’t have it?

When I take my car to the shop to have something serviced, I keep a record of what was done. Same goes for any work done on my home. And many people I know do the same.

However, those same people generally don’t think to keep records of what was done to their bodies. Even though it’s arguably more important than what was done to their cars.

Furthermore, if you decide to take your car to a new mechanic — maybe you weren’t sure about the old one, or maybe you moved to a new town — would you show up with no records of the work done on your car so far?

Well, you might, but it’s not a great idea. When assessing the state of a car — or a person’s health — it’s extremely useful to know what has happened in the past, and what other professionals have done or attempted, when it comes to diagnostics and treatment plans.

So really, why don’t more people maintain at least a rudimentary personal health record?

Some of the problem is culture and habit. Many people are used to the idea that clinicians are the ones who keep our health information, and whose responsibility it is to send it to others when necessary. This idea persists despite most of us routinely encountering evidence that clinicians often don’t do these tasks well.

The other problem is that so far it hasn’t been easy to maintain a personal health record. You need to be able to get the necessary information from the doctors, you need to put it somewhere (physically or digitally) and then the information needs to be fairly easy to review. And what a lay person needs for the info to be easy to review might different from a clinician’s usability requirements.

Hence, I have yet to see a PHR take off. I do see people toting paper binders with their records, but only the most dedicated early adopters seem to be using digital PHRs. (Although if you have one to recommend, by all means mention in the comments.)

The problem of transferring or sharing information among clinicians

Now here is another related problem I’ve been struggling with: why is there no easy way to transfer health information to another clinician?

I am currently in the process of helping a patient transition to a new PCP. I’ve followed this patient for a few years, so at this point, I have a lot of records related to her care in my EMR.

My EMR allows me to fax it all in one gigantic collection but wow, that will be a pain for the other provider to sort through.

I found myself wondering why it’s not possible to digitally move useful medical information more easily.

(I am not talking about creating some kind of CCD or blue button download. I have received those and don’t find them quite satisfactory, as part of what I usually need is to read through the notes of other clinicians.)

As far as I know, it’s usually not possible to export all clinical notes and enable another provider to easily import them. This is probably because we are all using different EMRs, plus clinicians themselves likely have little interest in making it easier for a patient to switch providers.

What about lab results?

I also found myself wondering why it wasn’t at least easier to transfer the patient’s lab results to the other provider. This patient has been going to Labcorp for years, and they are one of the two dominant providers of outpatient labs.

Surely the other clinician has a Labcorp account. So I found myself wondering if there was a way to get Labcorp to release the patient’s information to the other clinician.

Now personally I hate getting lab results on paper/fax, because you can’t trend them or otherwise visualize the data in different ways. (This is why I don’t like PHRs that keep all lab results as PDFs of the results. It’s much better to store lab results, BP/pulse, weight as discrete data that can be tabled or trended. If someone shows me lab results indicating anemia, I want to see the past CBCs right away. Context is everything.)

So I would prefer to not have Labcorp fax the provider every result I ordered for the patient. It would be much better if the provider could import the discrete data into his own EMR, or at least view it within LabCorp’s new online interface LabCorp Beacon.

Speaking of the new interface: I called Labcorp to find out if there was a way to release the patients lab info to the new provider. Here’s what I have found out so far, by calling the toll free LabCorp number on the results sheet they fax to me:

  • Seems to be no way for me to establish my own LabCorp Beacon online access without talking to a sales rep.
  • If the other provider has “LabCorp Global Beacon” he can see any patients data within LabCorp. (Really??? I am curious to find out if this is true, as seems to me that either a prior provider or the patient should have to give a clinician permission.)
  • Unclear if I will be able to share or send results with another LabCorp account holder once I get access to LabCorp Beacon. Unclear how much – if anything — using LabCorp Beacon costs. (I am guessing it’s not free because otherwise why would I have to talk to a sales rep? But also plenty of other industries have found ways to set up accounts and charge people online, so why do I have to talk to sales rep?)

I am still waiting to hear from the sales rep.

In the meantime, I can’t help but think that by now it should be easier for people to get and keep copies of their health info. And it should likewise be easier to share or move health information, or at least allow another provider to access the data.

Instead, we are still stuck with faxes, or occasionally CDs that have images and PDFs or CCD files on them.

For now, in any case.

 

Comments

  1. Esther Cistone MD says:

    Dr. Kernisan. Both in practice and in trying to care for my 93 year old parents, I am always interested in your reflections and experiences trying to deliver high quality care to your geriatric patients. The barriers exist across all aspects of health care delivery. You have turned to the tech world, EHR, for help. But EHR design has failed more often than succeeded. The only solution I can think of would be a registry or universal database for all health care entities, like our vaccine registry. But no one seems to be moving toward this and each entity is bogged down with their internal security threats and breaches. I heard a great panel discussion on these topics from World Affairs.org called Connected Health Care: Have we reached an inflection point. One panel member was Dr. Aenor Sawyer from the Center for Digital Health Innovations at UCSF (she is an orthopedist). Have you two had conversations about this tremendous need? The podcast is free if you select the designated link from http://www.worldaffairs.org/podcast#.V0OdZP3mp6k, or hear the direct broadcast at http://traffic.libsyn.com/worldaffairs/10_16_15_WA15_Connected_Health_Care.mp3. I think you could pitch Integration of Health Records as a project for the Innovation Center, much like information access platforms for users of social media have been developed. This is a problem waiting to be solved and with the right minds and venture capital …

    • Leslie Kernisan, MD MPH says:

      Thanks for these comments and for suggesting this podcast episode. I do know Aenor Sawyer as I am part of the UCSF community and have crossed paths with her a few times at some of the Bay Area health innovation events.

      I agree that a universal database would be terrific, but given security breaches so far, I can see why it’s hard to move forward.

      I do feel that there are some odd failures. LabCorp and Quest already maintain data on millions of patients; would it be a huge security risk to facilitate transferring that data to patients, or enabling providers to share it with each other?

      For now I don’t have the time or interest in pitching a solution, because most of my time is focused on coaching families to better manage care via BetterHealthWhileAging.net. But that is where I get a little stuck. I tell people to create and maintain a personal health record for themselves or an aging parent, but it is really hard for them to do so.

      I once recommended a PHR product to families and part of the service was to request records from other doctors. However both families who tried it found the requesting process cumbersome and it took forever to get records (because providers have up to 30 days to respond and if they don’t you can try again or launch a complaint; neither option gets you your information promptly). And then viewing the records was a pain for the families and for me as the assisting provider, because you end up with a string of PDFs, most of which do not even have text recognition enabled.

      I am waiting for a better option but I think it is hard for companies to develop because there is not much demand from the public so far. I don’t know that a small company will be able to do it; seems one would need the resources of a larger company like Google (try PHRs again Google!) or Microsoft.

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