E-Patient Update:  Keeping Data From Patients Has Consequences

Given who I am – an analyst and editor who’s waist-deep in the health IT world – I am primed to stay on top of my health data, including physician notes, lab reports, test results and imaging studies. Not only does it help me talk to my doctors, it gives me a feeling of control which I value.

The thing is, I’m not convinced that most physicians support me in this. Time and again, I run into situations where I can’t see my own health information via a portal until a physician “approves” the data. I’ve written about this phenomenon previously, mostly to wring my hands at the foolishness of it all, but I see the need to revisit the issue.

Having given the matter more thought, I’ve come to believe that withholding such data isn’t just unfortunate, it’s harmful. Not only does it hamper patients’ efforts to manage their own care effectively, it reveals attitudes which are likely to hold back the entire process of transforming the health system.

An Example of Delayed Health Data
Take the following example, from my own care. I was treated in the emergency department for swelling and pain which I feared might be related to a blood clot in my leg. The ED staff did a battery of tests, including an MRI, which concluded that I was actually suffering from lumbar spine issues.

Given that the spinal issue was painful and disabling, I made an appointment for follow up with a spine specialist for one week after the ED visit. But despite having signed up with the hospital’s portal, I was unable to retrieve the radiologist’s report until an hour before the spine specialist visit. And without that report the specialist would not have been able to act immediately to assist me.

I don’t know why I was unable to access the records for several days after my visit, but I can’t think of a reason why it would have made sense to deprive me of information I needed urgently for continued care. My previous experience, however, suggests that I probably had to wait until a physician reviewed the records and released them for my use.

Defeating the Purpose
To my way of looking at things, holding back records defeats the purpose of having portals in the first place. Ideally, patients don’t use portals as passive record repositories; instead, they visit them regularly and review key information generated by their clinical encounters, particularly if they suffer from chronic illnesses.

It’d be a real shame if conservative attitudes about sharing unvetted tests, imaging or procedure data undercut the benefits of portals. While it’s still not entirely clear how we’re going to engage patients further in managing their health – individually or across a population – portals are emerging as one of the more effective tools we’ve got. Bottom line, patients use them, and that’s a pretty big deal.

I’m not saying that patients have never overreacted to what looked like a scary result and called their doctor a million times in a panic. (That seems to be the scenario doctors fear, from conversations I’ve had over time.) But my guess is that it’s far less common than they think.

And in their attempts to head off a minor problem, they’re discouraging patients from getting involved with their care, which is what they need patients to do as value-based care models emerge. Seems like everyone loses.

Sure, patients may struggle to understand care data and notes at first, but what we need to do is educate them on what it means. We can’t afford to keep patients ignorant just to protect turf and salve egos.

About the author

Anne Zieger

Anne Zieger

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.


  • Anne,

    Great post – important topic.

    As you point out – you are not the average health consumer. Going out on a limb here, but I doubt that anyone reading “EMR & EHR” qualifies as an average health consumer.

    You know what to ask for, you know what is allowed, what is required and what to do with your data that you are able to obtain.

    An unfortunate outcome of the industry’s view of data – “guard the data” – is that it inhibits innovation. That is, given there is no consistency in access to data, let alone structure of data, potential innovators that could bring solutions to market that would interpret data (at a non-professional consumer level) and provide value/actionable insight to consumers interested in their health are unable to attain any level of scale that would make those innovations commercially viable.

    The true irony – just looking at the raw numbers approximately 330,000,000 health consumers in the U.S. and less than 1,000,000 physicians – how many people go untreated for conditions that could be more easily identified, and identified earlier through data analysis? Yes holding the data does have consequences.

  • Brian,
    Agreed that people that read this site are largely advanced in their understanding of these topics. Although, I think that illustrates the real challenge. Readers of this site have challenges getting to the data. How is someone less informed suppose to navigate the system?

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