Ah, social media. On Facebook a couple of hours ago, Swedish SPM member Sara Riggare posted:
Responses were quick and robust:
- “Web MD has an app that you can download that I use. I find it pretty useful.” – Mark Burek
- “That’s a sticky question. I tried Caresync ([SPM member Amy McFall Gleason’s app) and thought it useful. I think I’ll check out the app Mark recommended.” – SPM member Casey Quinlan
- “Have you tried Family Medical Manager?” – Pernilla Jackson
- “Although I’m not a user with active conditions to manage, I’m strongly drawn to Hello Doctor. I was an advisor for a short time but withdrew because I wanted to be able to talk about it, unencumbered. A big limiting factor is that it’s iPad-iPhone only.” – me
- “We should include the blog post by Society for Participatory Medicine president-elect Nick Dawson, “Evernote is my EMR.” – me
In minutes the idea arose of starting a discussion here on the blog – a much better place than Facebook for a discussion you want to return to. Then this:
Amy, I’m thinking this could become a totally unguided exploratory spreadsheet (Google Doc), with features down the left side and products across the top. It may soon become too big to be usable so something fancier is needed, but we could start.
So here we are:
This is a spontaneous project to collect thoughts on two things:
- What good tools do we know of, to keep track of our own health information?
- And by the way, what do we mean by “good”?? What features do we (the patients, the users, the ultimate stakeholder) say we want?
We’ll start with comments on this post. Game on!
By the way, we’ll welcome non-hype contributions from makers of such products. Give a short description of the product and link to its site. Our goal is to inform e-patients and families about their options – and about what factors to consider.
Thanks Dave for giving my question a wider spread!
For me GOOD includes:
-easy to use
-I control who gets access to my data
-ability to import from EHRs
-interoperability with Health IT standards
-able to integrate data from different trackers (BP, weight, HR etc)
-useful visualizations of my data
For GREAT I also want:
-to be able to ask advice for making sense of my data
I don’t think the ideal system is out there yet but would love to learn about the ones that are.
While I was writing this, on Facebook Lucien Engelen (creator of the Patients Included badge) added:
“One of the great solutions out there is Patients Know Best. One of the underlying partners of Hereismydata. Stay tuned if you have another month or so. Sept 18th we’ll have some important news”
[http://www.HereIsMyData.org is in Dutch, but the 98 second video presentation on the page is in English, and he says the released product will be in 12 languages(!)]
I think that each of the above products are good in some life situations. For example I used CareSync for my own records and it was great to see 7 years history and test results within reach. I tried it for my recent husband’s hospitalization and a lot of relevant info that we have and need in the moment is not stored.
Because this is fresh in my mind, I’d like to suggest a patient EMR spec for a patient with an acute serious issue that requires a short hospitalization. Keep in mind that they will send the patient out of the hospital as soon as possible (which is good for infection control), but there really isn’t any time to understand and process what is going on.
I think it would be most useful to have a log of anyone interfacing with the patient with name, title and a short description of why they were there, what was discussed/decided and any questions the patient had. This would be cool for the patient that is seen by ten or even more clinicians to keep track of what is said and who was there, but also for other clinicians. If patients keep asking again and again when will the doctor come in or when do we expect to be released, maybe someone would notice and give them a good answer.
Maybe we’ll then start preparing answers for these real FAQs. Also if no one ahead told the patient something important, someone will notice. Also if someone mentions they taught the patient something and the patient doesn’t remember learning that, the patient can ask someone else.
Thanks, Ileana! I love that (with your engineer / database mind) you’re thinking about a specific, high-value use case.
Product developers should note that Nick Dawson’s post above also lists several specific needs that Evernote meets for him.
I’m going to take Evernote for a spin now! Great tip, thanks!
Update 2 years later – Sara, did you do anything with Evernote? Any further thoughts?
When caring for a child who sees multiple specialists, I want to be sure that each of those specialists know what each of them are doing. I do not want to have to remember all of the information.
I want reminders of what she needs because I cannot keep up with it all as a working mom.
I want to be able to track what happens in between appointments because none of it is clear, in her mind or mine, weeks or months later.
I want my husband, parents, and brothers to be able to access her Information and share it if they need to take her to an appt or in an emergency.
I want to share with our family what happened at each appointment without having to tell it 8 times.
I do not want to spend hours of each day/week doing this stuff, and I do not want to log into 12 different portals to try to do it in pieces.
In fact, I really don’t want to have to remember to do anything and want it to be done for me so that I just get reminders.
I want reports and analytics to show me things I might have missed without them. For example, my daughter went to the hospital so much for the year before her diagnosis but I honestly didn’t realize HOW much.
I also want a place to keep track of my questions for the doctor and an easy way to record the answers.
As a patient who just had major surgery, I want to understand what happened in surgery, get reminders on things I need to do after surgery at the appropriate times, easily and quickly track symptoms and problems so that I can share that with my doctors. I want to get reminders to take scheduled meds and I want to keep track of when and how much pain medicine I took. I want all of this information tagged so that I can find it quickly now or in the future.
As the daughter of a mom who is fighting cancer, I want to help her keep up with everything. I want to take the burden off of her (and my dad). I want to know when she has appts and I want to know how they went. In fact, I want to know more than she will ever remember to tell me.
I want to be able to add questions for her visit and to get the answers. I want to know if she has any probelms in between appts. I want analytic tools to show me things I might need to worry about and things we can celebrate. I want to encourage her through her treatment. I want to work as a family team to help her.
I am sure I could come up with much more but there is a start :)
Amy, that’s terrific! There’s so much that I was getting lost in it, so I took the liberty of inserting a ton of returns so each item can stand out on its own. Thank you!
Yes Dave and Amy, great list and every item is relevant, useful and desirable. But the list makes me so sad… Personally I would pay plenty for those services but I see very little chance for that to happen. Healthcare is just too healthcare centred….
Sara, that’s EXACTLY why I want “Data liberación” – so innovators out there can develop things, at their own risk, and let the market discover what works as time goes by and cases unfold.
(In other words, it’s all WAY too complex to figure out in advance. Let’s liberate the data and let everyone from big companies to kids in garages see what they can come up with that WE find useful.)
Sure Dave, but how can we get the companies controlling OUR health data to release it? And on a global scale?
Or even: how can we get our healthcare providers to give us our own data?
Sara, I’m no expert on the range of products, but I believe one thing Hello Doctor does is let you photograph any printout, which it can then OCR into searchable and taggable text. This is of course not as good as if you could download it *all* directly, but, one thing at a time.
(I’ll add, consistent with the original post, that vendors are welcome to add factual / non-hype responses on product features here.)
Dave, “Hello Doctor” sounds great and I look forward to the day it supports Swedish (which is unlikely to be sometime soon, given our smallish market…)…
Ok, now that I posted my personal requirements, I will do my “non-hype contributions from makers of such products” as Dave called it. :)
At CareSync, we are working very hard to solve as many problems as we can for patients and their caregivers. CareSync believes that patients should be at the center of healthcare and that patients should be in control of their health information. Frankly, we got tired of waiting for dat to be liberated and for it to be simple enough for average users to do it and easy enough that you don’t want to beat your head against a wall every time you try to get information.
CareSync is a free app that allows patients to store medical records, track medications, get reminders on things that are due, and plan for and document appointments. It is a family health record and the patient can decide when the information is shared and who can see it. CareSync includes visit tools to help plan for and record what happens at visits. This is the do it yourself model.
From my experience as well as many of our users, we know that managing all of this information is a lot of work. It is not easy to even get your medical records, much less make them useful, organized, and searchable. We also know that providers don’t have time to read through hundreds (or thousands) of pages, so we know that the information needs to be summarized for it be make an impact when shared. CareSync Plus is a service that takes the burden off of patients and their caregivers. CareSync Plus gathers your historical and/or current medical records and then breaks them down into useful information that is shareable. For example, all of the follow up items from a visit or hospital stay become tasks with due dates that generate reminders. Medications become scheduled or as needed medications with reminders and tracking tools. Medical Records become a health timeline that is filterable and shareable with anyone from anywhere. We are basically liberating the data and creating a patient-driven HIE one patent at a time.
We are working on many other things such as more personal tracking and automated recording information from medical devices (coming very soon!). Check us out at CareSync.com and in the Apple and Android stores.
Amy, want to talk about the Swedish market? :)
Ha ha yes we should talk!
Obviously, this is a topic that no one here cares about <= TOTAL SARCASM.
I love this conversation for a bucket of reasons, not least of which is that it started in Sweden, got lots of input in the US, and then the Netherlands jumped in with great ideas, too.
What this tells me is that electronic medical records data MUST be under the control and direction of the PATIENT, since we're the ones who might need medical care in Australia or Indonesia while traveling.
This IS a human/civil rights issue. So … let's bang on that drum.
“how can we get our healthcare providers to give us our own data?”
“but how can we get the companies controlling OUR health data to release it?”
There is something simple, safe and cheap that everyone can start doing tomorrow: ASK FOR IT.
I’m perhaps channeling Arlo Guthrie, here, but there is little doubt in my mind that it would make a HUGE difference if every patient said at the end of every visit: “Could you please send me a copy of today’s visit and the results of the tests we decided to order today?”
It might even be worth the nuisance of providing a SASE each time, to take away some of the financial disincentive. Remember, they are legally required to comply, If you ask, it is not optional. And if enough people ask often enough in enough different settings, the system will find a way to make it happen on a regular and automatic basis.
Or, so I believe.
Peter, you have proven that once again Ross Martin (composer & producer of the Gimme My DaM Data rock video) is ahead of the curve. From a 2012 blog post:
Alice’s Restaurant updated: “e-Patient Dave’s PHR”
From the lyrics:
That song – the whole thing – is here.
Financial incentive is a key issue and will be key to success or failure. What does SASE stand for?
(It means self-addressed stamped envelope)
Thanks for the plug, Dave. Would love the chance to do it live sometime when you’re speaking.
I will MOS DEF work on being there to sing backup!
Ever since my stack of clinic notes started to outgrow my ability to file them, I’ve been wishing for something like this. I want all of the above, but I’m drawn to Cristin Lind’s care map. I don’t have data and discussions purely in the med-o-sphere; I take our info with me, and use it to build connections, allies, resources in our schools and community.
Oh, and if wishes were horses, well, I could use something that would remind me when my kids are overdue for that mundane dentist appointment, or refilling from the mail order pharmacy (mutter, mutter), or the blood work we need to do before that procedure can even be discussed.
Because the list of things I can’t store in my head is so very, very long…..
All, this is great! Let’s remember, too, to list any products people currently use. We want to generate a really useful pair of lists.
Have been caring for wife for 45 years and her diabetes, since 2007 for Kidney transplant, and stroke and 2009 breast cancer. I NEED a program for daily vitals and insulin and INR and carb records. Need this for doctors on visits and for Medicare for justification for supplies. Working out of XL and own crude stuff. Not easiest with part-time care givers and my self. HELP!!
Thank you Dave for mentioning Hello Doctor along with these great tools.
I will properly introduce myself. My name is Naama, I’m the user engagement manager at Hello Doctor. I want to start by saying that this conversation is extremely interesting and valuable to our company. We are constantly working on making our product better for our users, based on their needs and feedback. I invite you to ask me any question and give us your insights.
Hello Doctor is a free mobile app that help people be in control of their heath.
The app allows you to collect all your medical info (paper & digital), from multiple medical providers into one simple app. You can take a photo of paper records, type in your medical info or simply email your digital files directly to your account. Even more, importing medical records directly from your clinics is coming real soon!
It then allows you to easily access your information during a meeting with a doctor and even share it with him by email and fax. You can also add your own comments on top of your medical documents to make sure you remember all of your questions and thoughts for better communication with your doctor.
You are more than welcome to download the app for free and give it a look – https://hello.do/d/epd
You are also welcome to contact me personally at email@example.com in case you have any personal question.
Thank you for this description! My first question (as always :) ): is Hello Doctor available outside the US? For example in Sweden?
Don’t get me wrong everybody, I LOVE this discussion and there is a reason why my initial question was in English and directed towards people in the US. But seriously, the world doesn’t end at the US borders :) There is a vast market outside of it called “The rest of the World” and I will personally help anyone with a product I find interesting to explore the Swedish market :)
Naama: any plans to make Hello Doctor available for android devices?
Love this post and thread!
Lisa Bonchek Adams designed a binder to keep herself and her health care organized — might provide inspiration:
The must-have binder: my key to being an organized patient (or caregiver)
I attended the Quantified Self Public Health symposium in April 2014 that brought together developers, researchers, and policymakers (and yes patients were in the mix). The videos were just posted and each one sheds light on a different aspect of data creation, liberation, rights, use, etc.
For this group & thread, I’d start with Anne Wright’s talk and then go to Eric Hekler’s and then just skip around.
You may have heard of us at Intake.Me as we host the bi-weekly #patientchat on Twitter.
If you’re interested in a product available on iOS, Android and the Web (basically from anywhere), allows you to store, access, and share your medical records with your doctors securely, capture symptoms, capture meds, and also lets you manage your own & loved ones records, please join our wait list at http://www.intake.me. We will also allow you to sync in your records from Evernote into Intake.Me, which will be HIPAA compliant. I love Evernote and use it all the time, but the shared notebooks aren’t secure enough for your doctors to use.
Also, I wanted to add a thought on the records discussion. I am currently in the process of requesting past medical records from my doctors. I highly recommend that you ask for a copy of your records at the time of your appointment – even when you schedule your appointment, let them know you will need a copy when you check-out. You do have the right to request past medical records, but the process is very time-consuming and costly. It is usually free if you get copies the day of the appointment. We did a recent #patientchat on this topic. Here are my resources here:
Please ping me with questions.
All the best,
This is such a timely topic. Here in the States, if your doctor is affiliated with a health system you will likely end up with a web based health data portal that you can call your own. Or can you? You will have access to all your data, but do you really own it? If you change doctors that data will not migrate with you because the systems are proprietary.
It comes down to data liberation, as Dave says, and patients having more ownership. While I applaud the start ups out there seeing a need for this service; be careful because the data might be mined or sold in a commercial way unless you read the fine print on privacy and opt out define your own parameters for data sharing.
> …a web based health data portal …
> You will have access to all your data …
Actually, as far as I know, you won’t at all have access to all your data. You’ll have access to a very limited subset – whatever your provider chooses to show you, on their version of the portal.
But a portal like Epic’s MyChart doesn’t at all let you see your doctor’s actual visit notes (the “OpenNotes” philosophy we’ve often written about), and certainly doesn’t let you see full diagnostic quality images; in fact many providers don’t even let you see lower-resolution images.
(My hospital, Beth Israel Deaconess in Boston, gladly gives me a free CD of my scan data – on the spot! – but will not give me access to the full resolution images.)
The mass media tend to be total wet-behind-the-ears newbies about this. And the impact of the difference is, we cannot pick up our cases intact and move to a different provider. Plus, any new doc will commonly ask to have scans repeated, etc etc. Since every CT is costly and is the equivalent of 300 x-rays, this is no joking matter.
Only when you and I *own* our data will these risks and inefficiencies be eliminated. I can no longer see any moral justification for any provider not giving us *all* our data. As far as I can tell, they keep it captive solely to impede us from getting care where we want.
As always I’m open to evidence to the contrary. VERY open, because I’d like the world to be better than I currently think it is. :-)
That’s a good point, Margo. There are decision makers choosing for us the extent of data that we see. It is odd; like Darla, I have all my doctors’ visit notes for the last 12 years in hard copy, so why are they not uploaded and accessible via the web portal?
I have written a book The Savvy Patient’s Toolkit that helps one capture ALL your medical information in a meaningful way and coaches you through the use of the information – how to compile your story, what to include and help expand your healthcare providers thinking to consider more alternatives, plus a lot more. Records can be kept on your computer and/or printed out and kept by hand ( comes with a CD of the forms. I wish you the best
Thanks, Margo! Yes, I recall that a lot of work went into creating the forms you found that you needed during your own adventures. Thanks for bringing up your book!
I also recall Lifetime Health Diary. Sounds like something several of you here would be interested in.
More more more! Let’s list ’em all! And don’t forget to keep listing the features you want.
I for one really really really really need all the reminders I can get – med reminders (that know when I’ve taken it), appointment reminders, next-appointment reminders, etc etc etc.
And I know that someday my docs’ offices will talk to my medical record system, too. (I mean MY medical record SYSTEM, not theirs.)
What do you all think about trying to find an open source EHR and adapting it to be used by patients?
I have no idea if this is any good but I did a search and came across this:
Sara, if anyone would know of an open source EHR project, it would be Fred Trotter – I’ll see if I can tweet-rope him in here.
Sara – I LOVE the idea of using an FOSS EHR for patient use.
There’s something very subversive about that idea!
Also, another plug for Evernote – used it today without even thinking about it. I bought contact lenses, got the receipt by email and forwarded it to Evernote. Took 20 seconds to add that tibit to my personal health record :)
Nick, glad you like the idea :)
I have been playing around with Evernote and I think it works very well. Thanks for the tip!
Still think there would be added benefits to have a patient connection to a real EHR though. I can’t program but would be happy to help in any way I can!
My problem is that every one of the suggested solutions requires one to manually add in the information to get a working record. That’s OK, IF one has very little data to put in.
Can there be some sort of standard interface so that one enters the data once, and the other programs convert as needed? This is true in all my genealogy programs; they each want you to convert from yours to theirs, so the conversion process is somewhat easy.
Hi Tom. This is EXACTLY how I felt. My daughter has a rare auto-immune disease, and I actually asked for most of her records as I went along but it took a LOT of work to get them, argue with people about paying for them, organize them, keep them organized, have access to them when I need them (didn’t always have computer), and to find what I needed fast enough that the doctors would give me time to find it before moving on to their next thing.
This is one of the main reasons that CareSync offers its service. Your part is literally 5 minutes (maybe 10 if you have a lot of doctors you have seen), and we do all the work. WE get the records for you, organize them, make them searchable and coded to standard terminology so that you can share them with anyone at any time. You never pay for access to your data. We only charge a modest fee for the human labor that is required to hunt down your records and organize them so that they are useful. We feel it is very reasonably priced for what we do, but I will offer you and anyone else who sees this thread a 50% off discount to try it with the code S4PM50. All I would ask in return is that you tell people how amazing it is once you have tried it.
I want a diary for my recurring symptoms, most of which don’t need my doc’s attention (and shouldn’t clutter the EMR), but which I want to track, in case an issue ever DOES need his attention.
Like, I’d like to be able to answer accurately when he asks, “When did you first notice this? How often does it happen?”
Right now I’m having a flare-up of a foot issue that’s been coming and going for more than a year. When it hits it’s a b*stard, and my use of ibuprofen, photos of the swelling, and diary of sleep disruptions ought to be archived somewhere. (Not to mention that I blogged about an episode 16 months ago where I was overseas. Even if all the EMRs in America could talk to each other, it wouldn’t help me in that situation.)
From the discussion here, I imagine that Evernote could capture the history, but I’d really like an organized, optimized symptom diary. (Owwwwwwww, the affected foot just kicked the desk….)
Thoughts, anyone? Product recommendations?
And here’s my post a year ago (4 months after Switzerland) about exactly this: Wanted: an “issue tracker / diary” tool.
Comments mentioned SympleApp, and MedYear (which at the time was not ready for prime time).
Well I’ll be danged – MedYear is out now, and the team includes social media buddy @EKiveMark Mark Scrimshire, who obviously is not abusing his social media privileges by blabbing about the product constantly.
And as regular readers here know, the CEO of SympleApp is SPM member Natasha Gajewski.
Count me in for the Dave’s Restaurant video. We are the customers and we own those high-res images and imaging videos just as surely as we own the French fries and catsup on the blue plate special ordered in a weak moment at the local diner.
The fact that we can’t always get copies/access to those images is what makes it a civil rights issue, since it takes away – unnecessarily – our choice to avoid the health risks of unneeded radiation and our access to the best, most appropriate, healthiest choices and treatments.
In the current environment, patients MUST maintain complete copies of their own medical records and tests, because hospital/doctor’s office portals – no matter how good they are – aren’t about you: their sole purpose is to tell the story of what goes on at that particular hospital/doctor’s office. Just because you see your name on the page doesn’t mean this is a story about you.
A complete personal health history (PHR) medical record, by contrast, digitally accessible 24/7, is all about you and only about you, and gives you the very best chance at the very best outcome no matter when and where medical challeges make their inconvenient, always unwelcome and ultimately inevitable appearance.
How can I force medical providers to give me my medical information? I have made requests and they all point me to a portal they maintain but condition my access to the records on agreeing to terms and conditions. I object to those terms and conditions (which limit me to which records I can access and totally make portability of my records) and so I refuse to sign their agreement.
Does the law require that I agree to the medical providers draconian conditions as a prerequisite to getting my own medical records?
This is a federal civil rights issue. You may have to pay a cost, but see this post for a flyer you can download and print. It is a Federal civil rights violation for them not to give you your data.
I’ve had 100% success at saying “I know it’s a Federal civil rights violation to not give me my records – who do I need to talk to?”
They do have to give you every word of your record – not the just limited subsets available in a portal. But to be fair, most clerical workers are not at all aware of this – that’s why I ask “Who do I need to talk to?” Don’t beat them up – talk to the people who make the policies there.
Let me know how it works out.
You should not have to force them to give you your medical records, because it’s your HIPAA-given right to, as a patient, get access to them in 30 days. Some states (CA, for example) have stricter laws to either let the patient see the original, or receive a copy for it.
They are allowed to charge “reasonable” fees to cover administrative costs – which is where it can get a little gray. Caresync.com has a team of Health Assistants who will go and get the records for you from all of your providers, scan the entire record in, and rebuild each past medical visit into a summary that’s easy to understand (as a non-clinically trained, average person) and even easier to filter and share with your family, caregivers, and providers.
Technology is awesome, and improves daily to help make this magic happen, but at the end of the day, it still requires the “brute force” and human touch of someone collecting, organizing, and compiling the records. CareSync connects people and data to put the power of that data into the hands of the patient – the result? Improved healthcare experiences for everyone!