Room for Improvement: Personal Health Records

(Please note – this also appears on Health2.0 Austin)

Sometimes, everything seems to happen at once. The week before last, I had a string of conversations with a big software vendor, a national health plan, a small developer firm, an academic research department, and a fellow industry analyst that all touched one one common topic: Personal Health Records (PHR). Then, last week I attended National Health IT Week, which the ONC kicked off with the big “Blue Button” initiative announcement to put data back into the hands of the patient or caregiver. Finally, after reading about AHIMA’s new guide to PHR, I decided it was time to revisit my notes and cobble together some observations from the last two weeks.

Unfortunately, the story remains the same as it’s been for the last couple of years: Despite the growth in consumer-driven health through a glut of apps, sensors, open data initiatives and a slowly changing culture encouraged by health reform, the dial on personal health records uptake has not really moved a tick. The percentage of Americans using PHR still hovers around 10 percent. Here are just some of the reasons that have come up in some of my conversations in the last two weeks.

Lack of Awareness

As ONC “Consumerista” Lygeia Ricciardi pointed out at the National Consumer Engagement Summit on September 10th, most people are still unaware that they can simply ask for their records. Moreover, as several panel members discussed, patients and clinicians alike misunderstand HIPAA laws. People persist in believing that HIPAA merely restricts access to information when in fact, it was designed to ensure secure access. As long as this is the case, we’ll see limited voluntary uptake.

Patients, not Patience

Sadly, many untethered PHR platforms still require manual entry of medications, treatments, appointments, and other data points. Not only is it silly to expect correct spellings, doses, and values from this process – it’s silly to assume people have the time and patience to do this in the first place. Best case scenario, they are forced to enter their own data when something goes wrong and they’re backed into a corner, and manual entry is the only way to manage their own information.

#ConsumerFriendly

Unless you are lucky enough to be a Kaiser Permanente member, your PHR is probably something that has only been out for a couple of years. While health plans like Aetna and United have made good progress in tying together their networks’ information pipelines, as long as patients access a piecemeal health care system that sees payers, providers, and vendors competing to provide their own PHR platform, it will be confusing and difficult for people to use. I spoke earlier this week with someone who tried to set up a HealthVault account, and she told me that after requiring her to set up a Microsoft Live account (she has a Mac) and a Microsoft Healthvault account, she got a series of registration error notices, had to restart her computer, and then had to wait for a confirmation e-mail. While Microsoft’s advanced market position is well-deserved in most industry observers’ books, so too is their notoriety among consumers.

 Lack of Trust

For the time being, people still trust their doctors the most. In an integrated delivery system, doctors have an interest in promoting self-management behaviors such as tracking, assessing, or proactively scheduling appointments. While payers have this same interest for financial reasons, they don’t carry the same cachet of trust in most peoples’ minds. Now, you might think there is a weak link between provider trust and PHR uptake, and you be partially right – but the bottom line is that people trust brands, whether it’s in banking or retail. Sure, healthcare is always a little bit different, but a site that is branded with a reputable health system’s name, or even referred to a patient by a trusted doctor might make more progress than we’ve seen to date.

So what trends will it take to turn this around? The same industry rhetoric about growing consumer-centeredness and improved patient engagement have been discussed ad-nauseum for the last few years without a tangible outcome. Here are a few of the possible (and perhaps more concretely definable) drivers:

  • Modern Design: Impeccable UI/UX is now table stakes. Clunky design, multiple logins and passwords simply won’t cut it. Only with the rise of mobile and tablet apps did the trend of health care design even emerge. It may take another iteration before it really takes hold and vendors design tools with people – not their competitors – in mind.
  • Integration: Again, we don’t like to use things that take hard work just to set up. Data pull is just the beginning – information needs to be more than an ASCII file in order to be useful – it needs to be sortable and modular in order for developers to funnel it into usable, practical platforms. And once this is achieved, let’s please give patients data they can make sense of.
  • The Role of the Caregiver: 30 percent of US adults are now caregivers, and as 10,000 seniors turn 65 each day this number will skyrocket. People won’t want to log in to a separate portal for themselves, their parents, and their children or spouse. As we all get used to these things, the grumbling demand for vendor-agnostic solutions will eventually rise to a clamor and some innovative companies will respond with software that doesn’t underachieve.

Do you think PHRs will eventually take off, in their current form or in a new iteration? What else might it take for this to happen? Let ‘s discuss below!

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About Naveen
Pursuing a vision of better health care. Reform, IT and patient empowerment. Find me on twitter @naveen101

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