Still In Search of a Personal Health Record & Trying Healthvault

Recently I completed a consultation on a new patient. This person had moved to San Francisco a few years ago, and was not sure he was satisfied with the care he was obtaining from his new PCP.

The consultation was a bit challenging for me, because I had no past medical records available to review. Nothing from the old cadre of doctors on the East Coast, nothing from the current PCP, not even anything from a recent hospitalization. No laboratory results, no studies.

(In truth, I usually decline to schedule an initial consultation until some of this information is available. I need this type of information in order to do my work assessing the person’s health and the current medical management plan.)

As I often do, I encouraged this patient and his family to start maintaining a personal health record (PHR): some kind of collection of his key medical information, all in one place and under their control. I explained that this would be a huge help if they wanted to

  • Obtain second opinions when necessary
  • Transfer to a new PCP
  • Be able to check on how the chronic conditions were being managed and consider other options
  • Get better medical care in the event of an emergency or possibly even while traveling

In its simplest form, a PHR is a collection of papers kept in a binder or perhaps file cabinet. Paper can be hard to keep organized, however, and can only be searched effectively if everything was first filed in an organized fashion.

So a digital approach would seem to be in order. Digital information is easier to search, and often more portable than paper information.

But I was annoyed to find that yet again, after recommending this family set up and maintain a PHR, I couldn’t actually recommend a specific product or service. This was surprising to me, because it was almost three years ago that I wrote this article for the Geriatrics for Caregivers Blog: Tools for Caregivers: Keeping & Organizing Medical Information.

Yet today, I still cannot recommend a tool that will do the following:

  • Make it easy to add or import health data, including importing of “Blue Button” download files
  • Allow searching of text and data, including lab data (which generally means not storing lab results as PDFs of the result reports)
  • Work on the web, iOS, and Android

There is more that I’d like to see in a PHR, but I thought I’d start by trying to find at least something with those criteria.

So I decided to see how HealthVault is working these days.

An afternoon with Microsoft Healthvault

I signed up for HealthVault a few years ago but only use it rarely.

Last week, I logged in again. I decided to see how easy it would be to add my patient records from the two big medical systems that I have been part of here in San Francisco: Kaiser Permanente and UCSF. Both these systems use Epic. Both offer me the option of downloading my health summary, which provides me with some type of XML file and a PDF version of my health summary.

I tried to upload my records to HealthVault. Now, bear in mind that I don’t consider myself a technical person. I don’t really know what “XML” is, other than some kind of format for continuity of care documents (which I think are the same things are “Blue Button Downloads”). I don’t really understand computer code or how computers organize things. But, I am usually considered a reasonably adept lay person when it comes to computers and files.

So if I have trouble doing something, it’s probably even harder for an average college-educated patient or family caregiver.

Here are some challenges and observations from my time trying to get and organize my records with HealthVault:

  • The downloads from KP and UCSF are zipped files. It’s not obvious how to get this into HealthVault.
    • It doesn’t accept the zipped file.
    • When I unzip the file, there’s a PDF and a folder titled “MachineReadable_XDMFormat.” This folder contains still two more folders, plus an HTML document and a text Readme file. I am annoyed and wondering what the heck I am supposed to upload to HealthVault. Or should I try each file in sequence and see which one actually works?
  • I try checking Healthvault’s Help section. I find a section titled “How do I get a CCR/CCD into HealthVault?” It says: “To add a CCR or CCD and the information it contains to HealthVault:
    1. Sign in to HealthVault.
    2. At the top of the page, click Add.
    3. Click the link for the document type (Continuity of Care Record or Continuity of Care Document).
    4. Click Browse, find the file on your computer, and click Open.
    5. Add a description if desired, then click Save.
  • I reflect on the fact that when I downloaded my info from KP, there was no mention of it being a “CCD” versus a “CCR.” It’s simply referred to as a “health summary.” In fact, I only recognize those terms due to my work as a physician with a little interest in EHR and HIE issues.
    • So do I have a CCD or CCR, and which file within the mix should be uploaded? Still unclear.
  • Eventually, within the unzipped files from KP, I find a folder containing two files with a .xml extension, and succeed in uploading one titled “DOC0001” to HealthVault.
    • HealthVault identifies it as from “Kaiser Permanente Northern California.” Yay!
  • I consider Healthvault’s offer to import specific data items into HealthVault.
    • It has a list of discrete data items and I can select whether or not to import.
    • The list is a little spotty, however. For instance, only one of my two medications on record is listed by name; for the other, the name field is blank, even though I can see what it is on the PDF version of my Health Summary (which is on my computer, not in HealthVault).
  • Since some useful bits of information seem to have been lost in translation from KP’s XML document to HealthVault, I decide to save the PDF version of my Health Summary too.
    • I discover that it’s not possible to view a saved PDF within HealthVault, although I do have the option of downloading it. Lame.
    • For comparison, in my own EHR MD-HQ, I can view PDFs and they also come with a little notes box, in which I can type some notes as I review the PDF. If HealthVault, had a similar feature and those little notes were searchable, that would make it easier to find the information one might be searching for.
  • I now try to import the XML file I obtained from UCSF’s patient portal.
    • Once unzipped, it seems to be structured just like the Health Summary from KP. (No mention of “CCD” or “CCR”).
    • However, I’m unable to upload it to HealthVault. Even though I find the same file named “DOC0001”, when I try to upload it I get this error: “We couldn’t complete your last action because:
      • There is a problem with the way the file is constructed. Please ask the provider to correct it and give you a new copy.
      • The following information may be useful to your provider in identifying the problem:
      • Invalid xml for thing of type ‘9c48a2b8-952c-4f5a-935d-f3292326bf54’ (Continuity of Care Document (CCD)). The required attribute ‘typeCode’ is missing. — The required attribute ‘typeCode’ is missing.”
      • Healthvault_error_msg.5.25.16
    • I give up on uploading this information from UCSF’s Epic system. Unclear to me whether the fault lies more with HealthVault versus the way UCSF’s Epic portal has packaged my health summary into its .xml file.
  • Some closing thoughts re HealthVault:
    • Neat that it can import the Health Summary downloaded from an Epic portal. But the process is not user-friendly and seems prone to bugs.
    • Too bad that not all info in my Health Summary ends up interpretable by HealthVault. Weird that it captured one but not the other name of my medications.

Other thoughts re the downloadable health summary

I have actually looked at quite a few of these downloadable Epic summaries over the past few years.

For new patients who want to give me some of their health info, it’s much more efficient for me to look at their PDF download than it is for them to print umpteen lab results. (On the patient portals, labs are often presented one.small.lab.result.at.a.time.  Which makes for slow going if you are printing a whole lot of them to keep for your files. And it should go without saying that having me or the patient request records from the provider is the slowest route of all.)

I have many quibbles with these summaries, and I will share two for now.

First, they usually don’t include hospital data or ER data, as best I can tell.

Second, they don’t include vitals data, such as blood pressure & pulse, or weight. This is very annoying since BP/pulse are relevant to many internal medicine conditions, plus can be an issue when it comes to falls, orthostasis, or streamlining of medications.

And being able to check a patient’s weight against past values can be priceless, esp when it comes to frailer older adults.

HealthVault may have encountered a translation problem when importing my medications from KP, but at least KP’s health summary tries to relay this information and HealthVault tries to capture it.

But BP/pulse seem to be not included at all in the Health Summary. In fact, when I look in my portal I can’t see it, unless I view my visit summaries one at a time.

As you may have guessed: to see what a new patient’s past BP/pulse has been, I sometimes have to go through their visit summaries, one at a time…because people almost never have this info in their own PHR.

Closing thoughts on PHRs and Health Summaries

I really believe that it can be very beneficial for people to maintain a personal health record. But so far few people do it. I can’t blame them, as it still remains really hard to obtain, import, organize, and share the information in most PHRs.

I have also found that it’s hard to search for information in many health information repositories, whether that’s a PHR, a patient portal, or — most recently — Labcorp’s online Beacon system, which will show me the results of any patient in Labcorp nationwide yet doesn’t allow me to search my own patient’s results for something like “vitamin b12”.

Health summaries don’t have much of the information that a clinician such as myself requires, in order to follow-up on a patient’s medical care.

All that data, big and small, and still it’s awfully hard to make good practical use of it.

Healthvault’s been around for a long time, and has a big company behind it. I think they could make things much better, but I guess there isn’t enough demand from users. So far. Here’s hoping that changes soon.

PS: some good recent related articles:

Time for a Patient-Driven Health Information Economy? (NEJM)

Transparent Electronic Health Records and Lagging Laws (Annals of Internal Medicine)

 

Comments

  1. Kaye OBrien says:

    I am a 71 year old with (so far) all of my faculties and tech savvy, but the solution needs to be simple from the patients POV. I assume a doctor needs my medical history as reference to treat my reason for the current visit/complaint. Some of my history will impact the doctors diagnosis and plan of treatment, but much of the history will be irrelevant. I keep a one page printed document with all of my information (created in MS ONENOTE) in my purse, and various other places. This one sided doc contains everything from my birthday to my blood type, a simple list of conditions & date of diagnosis & Dr/medical facility Etc, & my meds. I love being able to go online & see my test results or email a question to the Dr, but when I am ill a sheet of paper is the least stressful way to go.

    • Leslie Kernisan, MD MPH says:

      Great that you are proactive and maintaining a summary of your health history. I agree that paper is great when one is in a hurry, and it’s also often the easiest thing to get a doctor to look at.

      That said, having looked at many people’s one page histories, I’ve found that most of them don’t contain much of the information I’m looking for. Sometimes it’s because I’m looking for something very specific, but often it’s just because many people don’t know what a doctor like me (an internist and geriatrician) is most likely to be interested in. So I think it would be good for most people to have a digitized health history, and ideally the doctor could search it without too much hassle.

      Thanks for the comment and these insights.

  2. Raj Sharma says:

    Excellent article/blog. Besides data from EHRs such as EPIC, there is also data in lab systems such as LabCorp and Quest Diagnostics. All these systems provide patient portals (thanks to ACA and Meaningful Use 2), and you can even download pdf files, but that is simply not enough. Apps need data in XML format. Hopefully with Meaningful Use 3, these vendors will have to provide APIs to patients so that patients (with their chosen Apps) can download data via these APIs. Once patients own their data, have easy access to their data on their phones, it is likely that all kinds of Apps will spring up to make this data portable across various healthcare silos.

    • Leslie Kernisan, MD MPH says:

      Yes, I’m looking forward to the day when it’s easier for patients to access their data. LabCorp and Quest in particular can have a lot of data for a single patient, but it’s usually ordered by many different providers and last I checked, patients couldn’t easily give the lab permission to release past results to their current provider.

  3. You can’t upload multi-page documents or medical images to Health Vault, because of a 3.5 MB file size limit that hasn’t been realistic or workable since the age of the dinosaurs. I added the document through a back door via another app, and complained vigorously to Microsoft, expecting my complaint ot be roundly ignored, and probably it was, and overnight my maximum file size mysteriously increased to an adequate 10 MB.

    However, the formatting is terrible. For example, family health history is garbled in format, in no particular order, and impossible to reorder or reorganize. You list CONDITIONS that EACH RELATVE had in the order they occur to you and that is how it prints out, in a weird tabular format you can’t control, with humungus amounts of extra space. It needs to be possible to either group by FAMILY MEMBER, or by illness with family members who had it listed, and order the conditions they had! Migraines and irritable should not for instance appear in the list ahead of strokes, diabetes, cancer and heart disease. I’m telling you! Poor doctor having to make sense of that list; most doctors I’ve met couldn’t sort it and just want the relevant stuff first where they can see it.

    Allergies mix individual drug and respiratory allergies, and food allergies and life threatening environmental allergies if you have them, together in no particular order and they can’t be sorted out or reordered. So a doctor is expected to pick my drug allergies out of my allergies to cats, dogs, pollen, mountain cedar, and cockroaches. What is more, the formatting is terrible; my list of four drug allergies and nine respiratory allergies is two and a half pages long. I don’t think so! There are six conditions per page, in large type, in weird tabular format, with far more blank space than anything else.

    Current serious medical conditions, current mild medical conditions, eye problems, and past medical conditions, are all mushed together with no way to sort it out and prints in a weird tabular format with huge amounts of excessive space.

    Lab results go in different places that will make no sense to the doctor. Blood pressure and cholesterol go in different places than lab results. I mean, …!!!!!!

    My basic personal information is in two different places, one in the middle and one at the END, and that makes no sense whatever. My emergency contact is in the middle of the page, twice, in one place labelled in tiny letters, emergency contact, and above that is the MANUFACTURER of my medical support stockings, as a CONTACT! I don’t think so!

    Mind you, the problem is that everyone at Microsoft is an idiot, and they don’t care. I don’t know who they expect to use this thing. I’ve never had a health practitioner even willing to use it! I don’t wonder why. That’s why I have to print it to take to my doctor. No doctor will even look at Health Vault!

    This app is a complete and utter joke!

    • Leslie Kernisan, MD MPH says:

      Many good points here!

      I think for now Microsoft doesn’t seem very invested in maintaining and improving Healthvault. I assume that doing so would be a lot of work and so they won’t do it until there is a good revenue/business opportunity involved. However since the public has not really demanded decent PHRs, it’s not clear when there will be much business incentive.

      As for doctors not looking at Healthvault…as far as I know most doctors aren’t terribly interested in looking at any app or online program, and they are most likely to look at something printed which is handed to them during a visit.

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