Over the last decade, more and more of us have been able to access some of our health information online, by signing up for and using portals where we can view our lab test results, prescriptions, and other key health information. Although some health plans offer online portals with access to claims information, an increasing number of us are familiar with accessing health information from our health care providers – in particular, from hospitals and larger medical practices.
The rise of patient portals can mostly be traced to federal Medicare and Medicaid incentive payments to health care providers, authorized by Congress in the HITECH (Health Information Technology for Economic and Clinical Health) Act of 2009. In brief, providers received funding if they used certified electronic health record technology to both maintain health information and make some of that information accessible to patients through portals.
It is easier for most individuals to access their health information if it is available online, at the touch of a button (or at least the entry of a username and password). Much like viewing your banking information online, patients can see everything instantly; without the need to submit a special request and wait 30 days for it. With portal access, key aspects of your health information are affirmatively provided to you promptly after a doctor visit or an inpatient stay in a hospital.
These early health care portals were an important milestone in the fight to empower patients with their data. But they also have some significant limitations:
With some exceptions, there is little to no portability of the information – you can view it online but the information isn’t easy to download in portable format or upload into a medical or health app;
If you receive care from multiple different providers, you don’t have a single place to go to see a more complete picture of your health history; and...
The portals include key health information – but a lot of information is likely missing (for example, no x-rays, no pathology reports, no clinician notes – all of which are critical pieces of health information, particularly for someone who is very sick).
Over the past several weeks, we have blogged about the HIPAA Right of Access – how it gives patients the right to all of their health information, to receive it within 30 days in most cases, to receive it in the form and format most convenient for the patient (as long as it is readily producible in that format), and to receive it at low to no cost. We have chronicled how, notwithstanding this right, patients often have to jump through multiple hoops in order to get the information that they need. (And many of you have been sharing your stories, too, using #myhealthmydata. Keep ‘em coming.)
How terrific it would be if all of the information that the patient had a right to under the HIPAA Right of Access could be accessed by the patient – or by an app or online service designated by the patient – with the push of a button or just a few keystrokes, within days or even hours of an encounter with the health care system, as easy as we can access our banking information today.
This capability exists today, but it is not yet available to all patients or for all medical record information. That is changing, however.
Earlier this month, two agencies with the U.S. Department of Health and Human Services – the Office of the National Coordinator for Health IT (ONC) and the Centers for Medicare and Medicaid Services (CMS) – issued proposed rules that will significantly improve the ability of patients to use an app or an online service to get more of their health information from their providers’ records, as well as claims information from their health plans. Imagine the ability to get your health information at no charge, and to have that information from all of your providers and health plans, organized in one online account, and able to be shared at your direction and under your control. To have all of that information without having to find a fax machine to submit a written request, without having to make numerous follow-up calls, without having reams of paper mailed to your front door — you just log-on, and it’s all there.
Both of these proposed rules are open for public comment (see links above), and it is critical for patients, their caregivers, and other interested parties to submit comments that support patient access rights.
The future for patient access looks quite promising, but at Ciitizen we are also pragmatists. These changes will not happen overnight — it will take months (if not the better part of this year) for the rules to be finalized. And even after the rules are finalized, it will be two years before the requirements fully kick in. And it will be even more years before all of the information that a patient has a right to under HIPAA is available at the touch of a button.
Cancer patients need all of their data today.
And this is why Ciitizen will continue to pursue all available avenues to get our users all of their health information – and why we will continue to press for improvements to the HIPAA right of access for all patients, whether through direct online connections or by pounding on every door.