This series of requests is usually about finding a good online patient group, but what the heck, why not this?
A heart patient named Chris from Long Island contacted me looking for something I’ve sought myself: a tool for organizing one’s records. I hope everyone who helped me with that last summer will be tolerant of my weak memory if I forget to mention theirs – my needs ended suddenly mid-search and I never got around to finishing the hunt. So here we are. This time we’ll record it in the comments!
Chris has hypertrophic cardiomyopathy, the enlarged heart-muscle condition that Hugo Campos has made famous. He’s never heard of Hugo, nor has he heard of the AliveCor, but he sure shares Hugo’s understandable desire to be responsible for his own well-being! That’s what we call being an empowered, engaged “e-patient.”
Here’s what he sent:
… I have been an advocate for myself insofar as I am able to try and garner information and ‘house’ my medical records for easier, access, transmittal and peace of mind. I fervently believe that this is a requisite portion of partnering with a doctor or medical teams to handle issues and provide solace.
As I had mentioned, I was diagnosed with a cardiac issue and being adopted, I never knew of my medical history. I have looked for years to find websites, apps and e-devices to scan, store, and file my medical history into one accessible hub. I simply cannot find one specific rating system or even helpful links that would provide more than a cursory glance into this technological world.
Here are the tools I know of, in alphabetical order, from past discussions:
- CareSync
- Kinergy Health (your doctor has to be a user)
- The Diary
Thoughts, all?? I know this field is advancing faster than I’ve been able to pay attention to it. Help!
Thank you for bringing up this topic, Dave. Personally I’ve been mulling over this for a long time but still don’t have the answer. Currently I keep myself in original format (mostly paper) all my relevant data. I also maintain a digital summary of my medical records and avoid storing any sensitive data on servers (so not in the cloud). I’m eager to to know the views of other readers.
Email subscriber Aaron writes:
Of these three sites, I like CareSync best- just has a really great UI.
In addition to that, I wear an 8G encrypted USB Bracelet with my mom’s med info (as I’m a primary caregiver) and my husband’s info and mine too.
My foundation just donated 150 of these bracelets to patients in our community. We included community-related, current research, etc. and distributed via mail. We use a password-protected web page to share updates. I encourage #TMWF community members to keep paper copies of their med records in binders (filed by provider or hospital) as well as this USB AND a back-up of it on a private computer (and a back up of that!).
The USB solution has worked exceptionally well for me on-the-fly, when the EHRs don’t work (fairly often)! It’s also great since USB technology abounds and it’s a wearable that is fashionable too! I’ve also found that many patients in my community don’t like the idea of a web-enabled software, because they are squeamish about who’s accessing their data behind that pretty UI! The USB is especially reassuring for folks who feel that way.
I’ve attached a picture of the USB I designed and donated. I also sell them on my Foundation’s online store.
https://yes-m-a-m.myshopify.com/products/2g-usb-medical-bracelet-black-leather
Hope this idea adds to the discussion!
Hi Dave;
Thanks for posting my comment. The USBs really have worked very well, and as I learned from you, New Hampshire (population of 3 million) is the ONLY state in the country in which THE PATIENT OWNS THEIR OWN DATA/MED RECORDS! Woohoo, New Hampshire! Live Free or Die!
As a resident of Texas, I like the idea of having all records in my hands as soon as I can get them!
Hello Everyone!. My name is Juan. I have lost my father and my older brother from cancer. Because of that, i have founded with my brother Jose, the vita-fx.org project. This project will boost health, improving the patients experience of health and will give to health teams the flexibility they need to work on patient centered approach.
Hello
We are launching a patient engagement platform that is in beta now but would absolutely work for this scenario. Please pass along our link we’d be happy to help!
https://app.lifespeed.io/
Great topic to bring up Dave. I’m always hoping to discover a terrific PHR to recommend to families, but can’t say I’ve found a great solution yet.
Some things I’ve tried:
– Gliimpse is in beta, and works like Mint.com. You enter access info for your patient portals and the site retrieves this data and presents it to you. Got my lab results and vitals from two health providers quite quickly. However not clear to me that it’s good (at this time) for uploading clinical documents or obtaining faxed info from providers.
– CareSync: Designed more for obtaining clinician records from providers. Doesn’t draw in patient portal data as far as I know. Has a lot of nice features but so far the families that I know who tried it are plus/minus on it. Probably best suited to very motivated families who especially want to obtain clinician notes and documents. (Most families I work with don’t feel strongly about this; they basically consider a PHR just to indulge me and make my work helping them a little easier.)
Kinergy I tried very briefly a few years ago, haven’t tried lately. At the time I tried it, it seemed similar to Caresync but had more communication features (within a family and w providers) built in.
Other possibilities include Healthspek, PicnicHealth, Prime (iOS only I think), and good old HealthVault.
Nothing I’ve seen has great usability, functionality, and ease of use. But all of these products are improving and something new and fantastic might come along too.
Thanks, Leslie! I know you’re in the trenches doing real cases all the time, so your input is valuable.
I’m aware of Gliimpse, which is limited to what you can see in the portal – MyChart or whatever it might be. Basically it screen-scrapes whatever I myself could see, and blends the streams and histories into a single stream, right?
But it only shows what’s visible in the portal, right? It doesn’t get past the portal to see what’s in the provider’s visit notes, as I understand it. In your view is its limited access useful anyway?
Yes, as far as I know Gliipmse only shows what’s in the portal and that generally doesn’t include notes. But I like getting laboratory results and vitals as discrete data that can be graphed or trended. Also I have an older relative who’s been followed for a health problems for a few years, and his labs are checked every 3 months. He usually spends a lot of time entering his results into an Excel spreadsheet; something like Gliimpse would probably be better for him. Whereas some of the other programs store laboratory results as an image or PDF of the results sheet.
I really like for people to get copies of their clinical notes, but so far almost no one I’ve worked with has seemed very interested in this. I’m still trying to figure out why this is…people are perhaps so overwhelmed at the thought of helping an older relative that they don’t feel up to combing through clinical notes as well. (in my anecdotal experience parents are much more motivated on behalf of a chronically ill child than are older adults for themselves, or middle-aged people for an older relative. But there are exceptions of course.) An added issue with getting copies of clinical notes is that it can take a while (as in, weeks or longer).
Thanks again very much, Leslie. Your practical experience both with the technology and with the people is invaluable.