Problems with Interoperability and Coordinated Care

Interoperability: connecting technology across health care. The idea is that if your information is in one system, clinicians can access your information wherever you go – like med lists, diagnoses, allergies, and more.

Do you know how it can backfire? Has it backfired on you? Probably not.

Interoperability is an enticing idea & one I was very excited about when the idea first arose – the idea that I wouldn’t have to fill out those long intake forms and instead my providers would have easy access to my health information so we could spend my visit on the important stuff.

Electronic health records (EHRs) connecting so that my information is coordinated and consistent across platforms – meaning I have less coordination to do, less work for both patient and provider. Exciting, yes? In reality, not so much.

Interoperability has long been stalled by vendors of EHRs. They (like Athena, Epic, Cerner, Greenway, Meditech, etc) want to keep your information in their system. They don’t want to share because they make money off people using their system and no other system.

The Health IT (HIT) infrastructure and ecosphere developed such that vendors were in high competition for doctors and hospitals to adopt *their* platform and stick to it. These systems were (are) expensive and all of them are imperfect – frustrating both patients and doctors.

In fact, the HIT ecosphere became so toxic with each vendor clinging to their proprietary interests, their came to be “information blocking” and last year with the 21st Century Cures Act, the government finally said, “enough” and dedicated itself to fixing this issue.

There’s a lot more on the history of interoperability but for this thread, the 2 main points are

  1. There are movements to coordinate care that include interoperability, and
  2. The government would like to stop “information blocking” and go forth with interoperability.

Both of these things sound good in theory but have adverse consequences for patients, who are not put at the center of this conversation and are given no control over how and what information is shared and with whom.

Right now, the government is proposing rules to increase interoperability/coordinated care. The Proposed Rules can be found here (deadline to comment on June 3rd). The Rules are long so I’ll just pull out one example of interoperability/coordination that stands out for me – hospitals alerting your doctor when you’re in the hospital. Again, sounds like a great idea. But it’s not for everyone.

I don’t always want my clinicians to know when I’m in the hospital because many will hold it against me. Particularly if it’s related to my mental health (including eating disorders or depression). I want to be able to tell providers I feel safe with on my own terms.

Until recently, I was stuck with an incredibly bad PCP who (it was later revealed) was actively blocking me from getting care and support. He hated me. He wrote terrible things in my chart. (That story is for another day) I did not want him to know if I ended up in a hospital.

While with other doctors, having them know I was in the hospital may improve coordination, with a bad doctor, this gives them ammunition to use against me in my care (up to the point for some patients of “firing” them). Automatically notifying my doctor could result in worse care.

I did not have options to switch providers. I was desperately looking to find someone who took Medicare and wasn’t full. I had tried everything but was stuck with a bad provider, and if interoperability/coordination happened as this rule proposes, I would be screwed.

My case may be rare, but I know I’m not alone. Many patients don’t have supportive providers and don’t have choices to switch. We are stuck and we aren’t given the choice of what information is shared.

There is an easy way to “fix” this – allow patients to opt in or opt out of sharing. They get to direct whether their information is shared. Granted, that is a blunt tool for a nuanced problem and has its own difficulties.

Here in Colorado, we have a Health Information Exchange called CORHIO. It’s used mostly to share imaging (xrays, MRIs, CTs, etc). I of course opted in originally. Finally some way to get images to providers who need them. Sadly, I now have to jump through hoops to get out.

Opting in was easy, I just said yes on the intake form. Pulling back out, I need to get a form notarized saying I want out. And while CORHIO has a portal for providers, they have no such portal for patients to direct their own care. Again, I may not want all of my providers to have access to all of my health information but the choice here is either they get access to everything or nothing.

Under HIPAA, I have a right to restrict access to my information and you can be more nuanced about what inforomation and who you want to restrict information from. However, this right is limited & it means you have to ask for it with each provider. A lot of work.

Why am I currently undergoing this work when I finally have a good provider who won’t chastise me for being in the hospital? Because of my safety. Here’s the thing, when your information is in one place, lots of people have access to it.

Again, HIPAA regulations state that people who are not involved in your care should not get access to your information. But HIPAA also does not require a full accounting of disclosures for every person/entity who gets your health information and implementing audit controls is not mandatory.

Having HIPAA rules in place does not mean people won’t violate them. A recent study found that most health care data breaches happened from insiders. And it was 14 times more likely to happen by a doctor or nurse.

Why are these folks looking at patient records they shouldn’t be looking at? Most breaches were financial-related but “6 percent of those incidents were motivated by “fun,” 3 percent for convenience, and another 2 percent were related to espionage.”

In other words, breaches happen a lot and for outlandish reasons. Patients, who have no control as to what is uploaded in their chart or who has access, also don’t often know that this is happening. Even if it is within the bounds of the law, it’s disturbing.

Recently, I had great care for my hip surgery (I call it Unicorn Care) but I also found out disturbing details about what was being shared about me.

When I came for my pre-op appointment, I was anxious. A surgery was cancelled a year ago after disclosing to the hospital that I had trauma and asking for accommodations. I did not want that to happen again and was limiting the information I wanted to share about my trauma.

Unbeknownst to me, my PCP has been uploading documents I gave her to a file in the Epic EHR called the “media tab.” I can’t see this tab in the patient portal. I have no clue what is in there & I’m still awaiting a records request to find out because they won’t give me a list outright. I entrusted her with things I’ve written and someone if she deemed it necessary, instead of asking, it was automatically scanned in to my chart without my knowledge or consent. Turns out the hip surgery hospital found them.

In this case, the hospital was receptive to the documents they found (I don’t know what all they found but they liked one in particular). But I was taken off guard to find out that they had access to it when I didn’t necessarily want them to have it.

In this case, the hospital was receptive to the documents they found (I don’t know what all they found but they liked one in particular). But I was taken off guard to find out that they had access to it when I didn’t necessarily want them to have it.

What if they found notes about my Borderline Personality Disorder or PTSD that would lead them to cancel my surgery as the previous hospital had done? What if it gave them bias to treat me as “difficult” instead of someone needing extra care?

Here, I was lucky and they were kind. But these aren’t hypothetical situations. There’s a reason I stopped putting BPD on my forms, I know the stigma too well.

More disconcerting, is knowing that anyone using this platform has access to this information, including some very sensitive information about my abusers – one of whom still works in health care in this state and can gain access to multiple systems with my information.

My trust has been severely damaged with this provider and I am more scared than ever about sharing issues I face with my mental and physical health for fear that my abuser could see it or other providers might see it and use it against me.

Interoperability is great until you realize that the patient has no control. No control what is in their chart. No control over how and with whom it’s shared. No control to get out. No control to stop the flow of information they trusted to be held in secret.

Interoperability is great if your providers are all kind and compassionate, if you don’t have stigmatizing illnesses, if you don’t have abusers that can gain access to your information. It’s a great tool to coordinate care, but not for everyone.

Here’s the bottom line to go with the 2 main points above.

  1. There are movements to better coordinate care that involve interoperability. But interoperability
    • a) doesn’t have the patient at the center
    • b) can result in harm;
    • c) can spread misinformation or secret information
  2. “Information blocking” is sometimes prudent. The government should not rush forward with rules on interoperability particularly when the patient voice is not being heard & the negative consequences are not being taken into account. We need to slow this down & think it through.

Once a proponent of interoperability, I find it much easier & more patient-centered to bring in my own personal health record (PHR). That way I’m in control. It will still be uploaded & shared without my consent, but at least this is one aspect of control.

As I’ve said before, if patients knew what information was out there and being shared about them, they’d likely be shocked. Too many patients know the damage done in healthcare when their health information is shared without consent – especially those who are already marginalized (people with mental illness, people with disabilities and stigmatizing conditions, people of color, people in the LGBTQ community, and more).

I encourage every patient to get complete copies of their records (not just what you see in the portal), develop your own PHRs, and be mindful of what you share even with providers you trust, considering many might have access to this information who you do not want to have access to it.

And if you have issues getting your records, this should help. Common HIPAA Issues – Health Records Edition.


*Adapted from my Twitter thread posted on May 25, 2019 found here.

**My submitted comments can be read here: Interoperability Comments 6_2019

2 Responses to Problems with Interoperability and Coordinated Care

  1. jennjilks says:

    This is very informative, Ering. Good for you.

  2. Frank Warsh says:

    Interesting take, and one I imagine few people either in health policy or health IT think much about, even when they’re in patient leadership roles. It underscores just how complicated the policy decisions really are, and at a certain point bad tradeoffs are made.

    Thinking of the example from your Twitter feed, the idea of using interoperability as some sort of fix for opioid seeking is simply wrong-headed on a dozen levels…most obvious of which is that the overdose crisis really isn’t a prescription drug problem anymore. The idea that there are millions of “doctor shopping” drug seekers out there is just false. The number of drug-seeking malingerers is minute as compared with people just looking for help with pain (opioids are rarely the right treatment for that pain, but that’s an entirely different discussion with a body of evidence that’s still evolving.

    Thinking about it, the optimal e-health info system (perfect is not possible) would have to involve some sort of cloud-based storage, accessed via a unique identifier (like our Canadian provincial health insurance numbers or even a SSN could work).

    It makes intuitive sense that who’s allowed to access that health information, and what information is allowed to be viewed, should be left up to the patient. But it’s not perfect.

    To deal with the knee-jerk counterarguments, there’s no validity to the “patient having something to hide” argument…malingering and factitious disorders are both rare. And there’s no emergency I can think of that a competent medical team can’t deal with in the absence of access to a patient’s complete medical record.

    But there is a valid counterargument to absolute patient control that might be called the “signal to noise” problem. Patients don’t, and really can’t, know the importance and unimportance of every piece of information in their charts. In particular when there’s trauma and/or mental illness in the background, a patient redacting his or her chart can lead to bad care decisions. It doesn’t mean we should throw out the idea of patient control, but the problem needs to be acknowledged and thought about.

    To be honest, I wish there were an answer to the problem of stigma in health care. Some of it – sexism and racism – will eventually abate, simply because the health professions grow increasingly diverse each year. With disabled persons or those with mental illness, that’s a different story.

    As always, Erin, really appreciate the insights you bring to the table. American health care has problems unique to America (like nothing ever happening without some rich asshole getting richer), but a lot of these issues are relevant to Canada as well.

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