E-Patient Update:  Keeping Data From Patients Has Consequences

Posted on September 20, 2016 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

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.