OpenNotes is an interesting and promising idea, but what I really need is for my patients to have OpenLabs.
As in, I need them to have the right to eventually access all their own labs online, regardless of which provider ordered them.
So that then, they can give me access when they ask me to help them.
Better yet would be if patients could easily import their labs into their own personal health record. This way all their labs would be together, regardless of which laboratory or facility performed the testing.
And these labs should be in an interactive, searchable format. That way, when I'm trying to help them out, I can query the entire dataset, and find whatever is needed to address the problem at hand.
Recently, I was called to consult on an elderly patient who's been declining. His labs seem to have been mainly done through Quest.
I'm a Quest provider, and the patient has given me permission to get medical records from the other involved providers.
But when I asked Quest if I could access labs ordered by other providers, the answer was no. According to my Quest representative, if another provider orders labs and wants to share them with me, they need to include an instruction to cc me on the results.
Otherwise, I need to contact the provider directly to get results.
Which I have done, and what I get are crummy fax copies of whatever the other provider's staff thought were fit to send.
So to summarize this common situation:
- Quest has all the results ordered by various providers, but won't let any single provider view them, even if the patient gives permission.
- Getting all labs for a patient who sees multiple providers means making multiple requests.
- The data is then delivered by paper or fax, hence hard to turn into structured data in my own EHR.
This is because I can provide better medical care to patients when I'm able to review and query all their labs. Specifically, I like to:
- Look at trends for certain results. So many lab values really require context in order to properly interpret them. Is that creatinine of 1.5 new, or chronic?
- Search to see if a test has been done before ordering it myself. Hm, has someone already checked TSH and B12 in this patient with cognitive impairment?
- Quickly gather the relevant lab results related to evaluation of a given condition. Let me think about this anemia. Let's see what the ferritin, B12, retic count, etc are.
When every provider has to play gatekeeper to the patient data he or she ordered, this makes coordination of care harder than it has to be. Which is why providers often end up ordering duplicate tests: it's usually easier than going through the hassle of requesting results from another doctor. (Clinicians often don't really notice the extra hassle to the patient and extra cost to the system.)
If we are serious about empowering patients to get the best care they can, we should remove barriers to patients accessing their own information, to consolidating their own information, and to sharing their own information.
Why should Quest treat lab results as if they belonged to the provider, rather than to the patient?
Well, I haven't yet researched the issue extensively, but apparently the 2009 law allowing patients to get electronic access to their medical records exempted lab data. In 2011 a new federal rule was proposed (search page for "CLIA"), to allow access, but seems it has not been approved yet.
If you want to learn more on this topic, here is a good recent commentary by Tim O'Reilly, and here is a NY Times article on the subject. There is also a JAMA commentary here, which highlights concerns about patients rapidly gaining access to abnormal results prior to provider counseling, and also comments on how direct access to labs might change the provider-patient relationship.
In a nutshell:
Effective medical care for elders often requires reviewing laboratory results ordered by multiple different providers. Even when all the tests have been done at Quest, it's currently surprisingly hard to get all the results, because Quest treats the results as if they belong to each provider. Each provider then becomes the gateway for other providers to access the data.
I say patients should have easy access to all their lab data, regardless of which provider ordered it. Just as some clinics are pioneering the model of OpenNotes, we should consider moving towards OpenLabs. Patients should then be able to share those results with whichever additional providers they choose, and transfer their lab data into their personal health record. Technology should facilitate this process. Sending a provider copies of labs by paper/fax is using antiquated technology and prevents the receiving provider from searching and filtering the lab data effectively.
Would love to hear from clinicians who have found ways to work around this problem.
Am also interested in learning about any personal health records that have been able to import labs from multiple providers and facilities.