What's wrong with patient portals?

Patient portals are the web pages that hospitals, health care plans, and other health care organizations have constructed for patients. You get a personal page that you can sign into that is supposed to provide you with, at least, access to your own health data. More importantly, the patient portal should be a tool for patients to engage in self-management of their illnesses, as prescribed by the celebrated Chronic Care Model. Here is the login page for the Cleveland Clinic, one of the more developed examples of a pediatric hospital patient portal. 

This is a great idea.

But as Chilmark describes, most of these these things don't work in practice. In an insightful post, he argues that most patient portals suffer from numerous ills including:

• Providing a patient only limited access to their records. There are no clear and consistent policies in place today as to what a healthcare organization is obligated to provide a patient access to.
• Do not support portability that allows the patient to export personal health information (PHI) to another site/repository that they can then control (e.g., Google Health, HealthVault or other PHR).
• Do not allow for patient entered data nor the ability for a patient to annotate records.
• Rarely support transactional processes such as online appointment scheduling, Rx refill requests, eVisits.
• Are just about as user friendly as a clinician’s EHR [Electronic Health Record].

The problem with patient portals is that they are not seen as an integral part of the care process. In fact, we would argue that the use of the terms PHR [Patient Health Record] and EHR create an artificial division – let’s just call it a CHR (Collaborative Health Record) and be done with it. 

It is perplexing that these tools should be so poorly implemented. Every business on the planet is developing tools to engage their customers; there's quite a lot known about this. Why, like everything else in information technology, do things work worse in medicine? Here are five obstacles I've encountered, in order of increasing importance.

1. Legal worries. Attorneys fret that patients may put inaccurate data into the record, and the hospital will be liable for mistakes carried out based on uncorrected data.
2. Security problems. EHRs are armored against hackers, and these fortifications impede the effort to give patients access.
3. EHR developers have incentives not to develop records that follow open engineering standards. If they did, there customers could more easily pick up their data and leave, or -- worse -- engineer their own applications without paying expensive fees to the developers' consultants.
4. The physician side of health care data is not yet well organized. Why is another post, but the problem is just overwhelming. This isn't the fault of the developers, and I question whether there was a golden age of paper records that made sense and facilitated straightforward information retrieval. Anyway, it's a mess. And now you want patients dumping information in there too? 
5. Health care providers can bear only so much patient interaction, and for good reasons. I recently developed an interactive voice response telephony application to improve communication between outpatients and specialists about medications with dangerous adverse effects. The technology was easy. The challenge was finding ways to filter the patient input through physician extenders so that the docs were not exposed to a firehose of patient communication. We had to rethink the care process and develop protocols for how various emergencies would be handled, making sure that the relevant information was channelled to the person qualified to handle it. This kind of thing needs to be done throughout the system; and it's slow and expensive.

 My guess is that the specialty outpatient surgery shops will solve these problems first. On the one hand, they have simplified their work processes quite a bit by focusing on a small number of procedures, and hence their work is protocol-driven. On the other hand, they compete aggressively on customer service.

This will be a step forward, but speciality outpatient surgery clinics will not and cannot manage the overall health care of a patient. Designing the patient portal that allow a patient to work with a primary care doc to really manage their care will take a long time.

Comments

[Tom Delbanco]

Terrific post, Bill. And as a group of clinicians and health services researchers exploring the evolving impact of electronic records on medicine, we couldn’t agree more. We and many colleagues are currently conducting an effort called OpenNotes, a demonstration and evaluation project in which more than 100 participating primary care doctors are inviting over 22,000 of their patients to read their encounter notes through a secure electronic portal. We are currently in the middle of a one-year, multi-site study, operating simultaneously at health centers in Massachusetts, Pennsylvania, and Washington state (www.myopennotes.org).

The barriers you discuss are important to note and have been relied on as arguments against evolving patient communication tools for many years. But we suspect that challenges such as the ones you list may well be overblown. Our preliminary impression is that security and legal worries do not attract much attention, neither from patients nor from the medical centers and clinicians involved. And so far, doctors are not reporting significant disruptions to their work, despite initial concerns that increased patient access to their notes would create the type of communication flood you worked to avoid in your telephony project. Moreover, patients appear to feel enthusiastic and empowered as they gather more information about their healthcare.

The vision we have had for the past thirty years is for the precise type of collaborative health record you discuss - ultimately we think it will become both an implicit, and someday explicit contract among patients, families, and those who care for them. We hope that the OpenNotes project, and open records more broadly, is a concrete step in this direction.

Transparency is in these days, and there's no reason to feel that health care can not profit from it. But it's a tricky business, and we're having an exciting time trying to learn about what it will entail. The unforeseen consequences will carry the most interest! Addressing the complexities of today's evolving health records, we’ve published a paper in the Annals of Internal Medicine that also has more detail about our project. You can read it at: http://www.annals.org/content/153/2/121.full.pdf+html

Tom Delbanco, MD, and Jan Walker, RN, MBA
On behalf of the OpenNotes study team

[Bill Gardner]

Tom & Jan,
First, thanks for your kind comments, and congratulations on _excellent_ work.
Second, I agree that the legal concerns are overblown, that's why I listed them first, meaning least important. I do find significant security obstacles to my work, but they can be overcome with effort.
The physician communication / task overload, however, is critical in the area I'm working in. I'll say more about this in a follow-up post.
Looking forward to more dialogue on this.
cheers
Bill