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E-Patient Update: Patients Need Better Care Management Workflows

Posted on March 10, 2017 I Written By

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.

Now and then, I get a little discouraged by the state of my health data. Like providers, I’m frustrated as heck by the number of independent data sources I must access to get a full picture of my medications, care and health status. These include:

* The medication tracker on my retail pharmacy’s site
* My primary care group’s portal
* My hospital’s Epic MyChart portal
* A medication management app to track my compliance with my regimen
* A health tracker app in which I track my blood pressure
* My Google calendar, to keep up with my health appointments
* Email clients to exchange messages with some providers

That’s not all – I’m sure I could think of other tools, interfaces and apps – but it offers a good idea of what I face. And I’m pretty sure I’m not unusual in this regard, so we’re talking about a big issue here.

By the way, bear in mind I’m not just talking about hyperportalotus – a fun term for the state of having too many portals to manage – but rather, a larger problem of data coordination. Even if all of my providers came together and worked through a shared single portal, I’d still have to juggle many tools for tracking and documenting my care.

The bottom line is that given the obstacles I face, my self-care process is very inefficient. And while we spend a lot of time talking about clinician workflow (which, of course, is quite important) we seldom talk about patient/consumer health workflow. But it’s time that we did.

Building a patient workflow

A good initial step in addressing this problem might be to create a patient self-care workflow builder and make it accessible website. Using such a tool, I could list all of the steps I need to take to manage my conditions, and the tool would help me develop a process for doing so effectively.

For example, I could “tell” the software that I need to check the status of my prescriptions once a week, visit certain doctors once a month, check in about future clinical visits on specific days and enter my data in my medication management app twice a day. As I did this, I would enter links to related sites, which would display in turn as needed.

This tool could also display critical web data, such as the site compiling the blood sugar readings from my husband’s connected blood glucose monitor, giving patients like me the ability to review trends at a glance.

I haven’t invented the wheel here, of course. We’re just talking about an alternate approach to a patient portal. Still, even this relatively crude approach – displaying various web-based sources under one “roof” along with an integrated process – could be quite helpful.

Eventually, health IT wizards could build much more sophisticated tools, complete with APIs to major data sources, which would integrate pretty much everything patients need first-hand. This next-gen data wrangler would be able to create charts and graphs and even issue recommendations if the engine behind it was sophisticated enough.

Just get started

All that being said, I may be overstating how easy it would be to make such a solution work. In particular, I’m aware that integrating a tool with such disparate data sources is far, far easier said than done. But why not get started?

After all, it’s hard to overestimate how much such an approach would help patients, at least those who are comfortable working with digital health solutions. Having a coordinated, integrated tool in place to help me manage my care needs would certainly save me a great deal of time, and probably improve my health as well.

I urge providers to consider this approach, which seems like a crying need to me. The truth is, most of the development money is going towards enabling the professionals to coordinate and manage care. And while that’s not a bad thing, don’t forget us!

Is HIPAA Misuse Blocking Patient Use Of Their Data?

Posted on August 18, 2015 I Written By

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.

Recently, a story in the New York Times told some troubling stories about how HIPAA misunderstandings have crept into both professional and personal settings. These included:

  • A woman getting scolded at a hospital in Boston for “very improper” speech after discussing her husband’s medical situation with a dear friend.
  • Refusal by a Pennsylvania hospital to take a daughter’s information on her mother’s medical history, citing HIPAA, despite the fact that the daughter wasn’t *requesting* any data. The woman’s mother was infirm and couldn’t share medical history — such as her drug allergy — on her own.
  • The announcement, by a minister in California, that he could no longer read the names of sick congregants due to HIPAA.

All of this is bad enough, particularly the case of the Pennsylvania refusing to take information that could have protected a helpless elderly patient, but the effects of this ignorance create even greater ripples, I’d argue.

Let’s face it: our efforts to convince patients to engage with their own medical data haven’t been terribly successful as of yet. According to a study released late last year by Xerox, 64% of patients were not using patient portals, and 31% said that their doctor had never discussed portals with them.

Some of the reasons patients aren’t taking advantage of the medical data available to them include ignorance and fear, I’d argue. Technophobia and a history of just “trusting the doctor” play a role as well. What’s more, pouring through lab results and imaging studies might seem overwhelming to patients who have never done it before.

But that’s not all that’s holding people back. In my opinion, the climate of medical data fear HIPAA misunderstandings have created is playing a major part too.

While I understand why patients have to sign acknowledgements of privacy practices and be taught what HIPAA is intended to do, this doesn’t exactly foster a climate in which patients feel like they own their data. While doctor’s offices and hospitals may not have done this deliberately, the way they administer HIPAA compliance can make medical data seem portentous, scary and dangerous, more like a bomb set to go off than a tool patients can use to manage their care.

I guess what I’m suggesting is that if providers want to see patients engaged and managing their care, they should make sure patients feel comfortable asking for access to and using that data. While some may never feel at ease digging into their test results or correcting their medical history, I believe that there’s a sizable group of patients who would respond well to a reminder that there’s power in doing so.

The truth is that while most providers now give patients the option of logging on to a portal, they typically don’t make it easy. And heaven knows even the best-trained physician office staff rarely take the time to urge patients to log on and learn.

But if providers make the effort to balance stern HIPAA paperwork with encouraging words, patients are more likely to get inspired. Sometimes, all it takes is a little nudge to get people on board with new behavior. And there’s no excuse for letting foolish misinterpretations of HIPAA prevent that from happening.