This is a tale of my nearly year-long attempt to integrate my family’s medical records from a small outpatient provider (MIT Medical) into my Kaiser Permanente HealthConnect EMR.
From 2008-2010 my family was living Boston where I was getting my MBA at MIT Sloan. We had been long-time Kaiser members before we moved to Boston and I had all intentions of continuing with Kaiser when we moved back West.
It seemed only natural that Kaiser would be eager to receive and integrate my records from MIT Medical. For example, I had assumed that Kaiser would be interested in the following:
- The asthma symptoms that my kids had developed while in Boston, and the associated medications they had been prescribed.
- The immunizations my kids had received.
- The preventative tests and checkups that we had all received.
Retrieving Medical Records from MIT Medical
MIT Medical is a self-insured outpatient clinic and a long-time user of Allscripts EHR. MIT Medical is no stranger to technology – they are part of MIT, after all.
However, gathering my family’s medical records was not a high-tech experience by any stretch. In May of 2010 I descended into the basement of MIT Medical into their small medical records office, where I signed the necessary HIPAA forms. There was no mention of CCD/CCR, though in all fairness I was hesitant to ask – this looked more like a paper shuffling office than anything else.
I elected to have the medical records sent to me (not Kaiser). I was told that I would be charged a fixed amount for every page of my record, but there was no way of knowing how many pages would eventually be sent. This struck me as odd, but I still agreed to pay the unknown bill when it came.
After moving back to California, I wondered how long it would take for my medical records to arrive. I received them within 2 months, which I assume, is the time it takes for a carrier pigeon to make its way from the east to the west coast. During this time period my daughter began to have problems with asthma symptoms and I had to take her to the Kaiser ER, where her doctors had no past information on her asthma symptoms other than what I could remember.
Nevertheless, with the precious records finally in my hands, I was ready for the next step.
Getting External Medical Records into Kaiser HealthConnect
Still hopeful of achieving interoperable-EHR nirvana, I contacted KP member services and was given the address of their medical records office. I mailed in the MIT medical records, and presto! I assumed I was done. However, in the back of my mind I knew it wasn’t going to be that easy… I never received a confirmation from KP that my medical records had been received, which made me doubt the whole process. However, I had other things in life to attend to besides this medical record integration project, and so I did nothing further and continued to hope for the best (the ‘best’ being that some individual or algorithm was turning the unstructured data from my MIT medical records into structured data and inputting this data into KP HealthConnect).
It turns out that I should have been a bit more pessimistic. It soon became clear that my doctors and KP in general had no idea that I had sent in the records. My pediatrician was asking me for my kids’ immunization records for the 2 years we were in Boston, and I kept getting automated reminders from Kaiser to schedule preventative tests and checkups that had already been done.
I then called the KP medical records office and had a very unsatisfying conversation where I was told that my records had never been received. With a feeling of defeat, I knew I would have to begin the process of secure-emailing KP member services to get to the bottom of this. The following is an account of those interactions:
- After contacting KP member services, I was told to call the medical records office (again).
- I called the medical records office twice but my messages were not returned.
- I secure-emailed member services again and asked how they were going to resolve this issue. They never got back to me.
- After a few weeks I secure-emailed KP member services again. Finally something got put into motion.
- I was called by someone from the medical records office. She told me that my medical records had never been received. She suggested that they had gotten lost in the mail? She advised that it was probably best to physically drive to the medical records office and submit the records in person.
- 10 minutes later I was called by yet another person from the medical records office who sounded a lot more authoritative than the previous person (she had no idea that someone had called me previously and had told me to drive to the office). She then informed me that my MIT medical records had been in HealthConnect since August 2010! I asked her why my doctors, member services, medical records personnel, and seemingly all of KP had no idea that the MIT medical records existed. Her response was along the lines of “They probably didn’t check HealthConnect”. Speaking to her further, I learned that the MIT records were stored as various PDFs within some content management section of HealthConnect (that apparently that clinicians don’t pay much attention to).
I secure-emailed my pediatrician and told him to check HealthConnect for the PDF. Luckily he was able to find the kids’ immunizations, reconcile them with what was in HealthConnect proper, and then prescribe the immunizations they were lacking. Total time it took to get this information to him? 10 months.
At this point I was more than a little disgruntled. Going through this process has shown me just how far away we still are from EHR-interoperability nirvana. I have been trained however. Whenever my doctors/nurses seem to be lacking information, I know now to remind them to please “check out that huge PDF file in your content management section of HealthConnect”. To my surprise, my clinicians are really only interested in the immunization data, ignoring the rest – even if that means that care and tests are duplicated.
The Big Picture
I realize that in this personal story of EMR integration gone wrong, the stakes for my family were relatively low. We do not suffer from complicated co-morbidities, deadly allergic reactions, or the like. There was never really any danger of life-threatening circumstances arising due to lack of EMR integration. For other less fortunate families who change healthcare providers, the stakes are obviously higher.
All in all, this experience has clearly demonstrated the general lack of interest in EHR interoperability among two very tech-savvy providers. There was absolutely no process in place at MIT Medical or Kaiser that made it known to me, the healthcare consumer, that I should take steps to integrate my medical records. Why didn’t MIT Medical suggest to that I might want to take my medical records with me when I left Boston? Why didn’t Kaiser ping me for my medical records as soon as I arrived back in California? Every step of the process was lengthy and painful, and required great initiative on my part.
There are some obvious reasons for this lack of interest in EHR interoperability in that the competitive advantages around not sharing patient data are just too powerful (but this is another post).
Looking forward to Stages 2/3 of Meaningful Use, I am left pondering how various parts of MU will break down if we do not accomplish data sharing. For example, how are we going to engage patients by giving them access to their clinical data if this data isn’t portable in a computable format? I remain reluctantly hopeful, and look forward to the day when the data in that PDF file residing within HealthConnect is finally fully integrated.
GREAT story. I mean, obviously it was a nightmare, but it’s a great example of how it ain’t just about the data transfer.
That was the problem in my PHR debacle two years ago: the hospital and its parent medical system are widely known for moving vast amounts of data around, rapidly and reliably, but clearly had no process in place to make sure WHAT was moved was safe, sane, and meaningful.
Where do we start in identifying what was missing in your story?? Some raw thoughts:
– The system knew a file had been received, but had no idea what information had been received. This seems to be the root cause of many health IT problems.
– Need far more granularity in the data structure. A PDF was received, but nothing in the system had any idea what was *in* the PDF. Thus, there was no way for the system to know that the vaccination records etc had been received.
– Should there be someone to vet the incoming data and see what’s in it?
– Perhaps that could be YOU, the patient/parent: “You have new imported data. Please plow through it and connect it to the fields in our database.” (That’s pretty much what we used to do in marketing data, when importing a file of unknown structure into our Salesforce.com database. You get a list on the left of the incoming stuff, and a list on the right of places in the database where you can put it (aka fields).
Salesforce itself has a rudimentary way to do this, and there’s an ecosystem of third-party products to do it better if you need that.)
For incoming health info that gets tricky because it requires knowing all the fields of the target database. So it’s not for many consumers. But if the system has a UI to do it manually (“Enter vaccination info”), it can be adapted to select the same options in an import routine.
I’d bet my house (well, my garage) that this will become a recognized role in EMRs: Data Blender Aide. It might be done by the provider, might be a trained community aide, might be something where one of your friends & family becomes the “known wizard” to help with this.
– Workflow, workflow, workflow. It ain’t just about the data. Look: the system was smart enough to know the vaccination field was empty, and not smart enough to know the information was somewhere in that PDF.
Maybe we need a new crusade: “Data transfer is not information transfer.”
(There’s so much code in this comment that I hope it comes out … y’all should have a comment preview plug-in!)
Hi Dave,
What a wonderful response. I would have gladly spent some time to do the manual work necessary to map my MIT data into a format that Kaiser would accept. However (in this specific case) EHR interoperability was not impeded necessarily by lack of technology or patient initiative. I sensed a general mistrust of “foreign” data from KP – the system was simply preventing this data from being integrated because it did not trust it. This came not only from the administrative side but also from the clinician side (my clinicians were never too keen on seeing the data integrated). I’m hoping that this is not always the de facto case – especially among providers that already have established relationships.
Well, then, let’s have a little chat with the Kaiser people. They may not be perfect but the ones I know are pretty accessible. Wanna, huh huh?
Dave, if you are game then so am I!
Hi Dave, Cora,
I would love to be part of that talk with Kaiser – as per the patient-centric Roundtable last week we know that “even” Kaiser have problems within this area of making data “patient-centric”.
As we know, top management in Kaiser would genuinely like to know what “patient-centric” actually looks like. Kaiser is a great system, but it is still a doctor’s system.
It ain’t gonna happen until the workflow is wrapped around the patient, rather than simply giving “us” a view of what our doctors see.
BTW, Dave I love your description of the “Data Blender Aide”. We have a group of San Diego Moms wanting to work out how they can do just that. Maybe we can work out a template to help them get the data in the first place, then organise it so it is now under their control and making sense.
Talk soon,
Your post resonates with my experiences but WITHIN the SAME city. I have a child with who is considered “medically complex.” She has approximately 10 specialists dispersed in different health organizations throughout my city. Fortunately for me, my insurer will pay 80% for these specialists. UNfortunately for me, I have to worry about whether MRIs, ultrasounds and x-rays performed in different locations will be accessible to the specialists. I have taken it upon myself to carry around CDs and printed-on-paper medical results because I cannot be assured they can look at what I know. I work inside health care so I know my way around and have become my childs’ case manager. How do other people cope? I have NO IDEA. I think the solution may come down to people demanding their own data on their own devices. I have no confidence that anyone else will find it quite as important as I do.
Stewart,
I agree that no provider will care about this data quite as much as the patient/caregiver. And for complex conditions requiring significant care coordination, it is unbelievable that amount of information that has to be kept track of.
From talking to friends of mine who care for sick parents, it looks like as the disease progresses, a (competent) son or daughter steps up into the role of case manager and learns the ins and outs of the healthcare system. For patients without this dedicated caregiver … I can’t imagine how they cope.
Thank you for the heartfelt post. It really points to the flaws in the current system and how making simple improvements can make such a big difference. Thank God that it was not a life/death situation!
HIE (health information exchange) is a crucial part of the medical records integration process and must be looked at closely by all parties involved.
What struck me most from your post was the fact that people inside the same institution had such disparate perspectives…its like no one was communicating or documenting the interactions that they had with you. Very odd.
I think the future is going to bring a lot of ease to this type of situation, hopefully that is near and not far!
Thank you for sharing your personal experience with HIE! I believe that the main issue regarding the healthcare industry today is this inefficient communication that can be noted within your blog post. Ultimately, better communication leads to enhanced patient care. I believe that interoperability, EMRs/EHRs, and other healthcare technologies need to work seamlessly with the processes, people and systems within every medical facility. As our population continues to age, there will be an increase demand for care- and should these current issues still exists, our medical professionals will not be able to adapt to this heightened demand.