the user experience of healthcare

I’ve worked for software companies for my professional life.  Coming to work in healthcare has been eye-opening for me.

The user experience is … well, let’s be generous.  Let’s call it “challenging”.  And it’s challenging for, as far as I can tell, everyone involved.

It’s challenging for the patients themselves.  Getting care is no simple matter.  There are decisions to be made, providers to find, waiting lists lurking.  There are healthcare and wellness apps which promise to help the patient in some way.

It’s challenging for healthcare providers.  We’ve seen an explosion in everything related to healthcare.  There is an ever-increasing amount of data.  Some of it is specific to a single visit with a patient, such as the results from blood work or an MRI.  All of this data, not to mention whatever notes are jotted down or diagnoses given or prescriptions filled, are aggregated into a patient’s healthcare record.  Any given patient likely has multiple of these health records, even if you only consider that a patient probably has a different health record with their primary care physician than they do with their dentist.  Keeping up with all of this data is difficult and time-consuming.

And that’s just the medical side of it.  We haven’t touched the administrative side of matters, which involves the patients, family members or other caregivers, the patient’s insurance company 1, administrators and office staff at the healthcare provider, and so much more.

All of this adds up to a bad user experience.  Some of the bad user experience is just annoying.  But, since we’re talking about healthcare, a bad user experience has risks far beyond annoyance.  A patient could choose to delay treatment because navigating the system just to get an appointment is too difficult and time-consuming.  A clinician could miss an important detail in the patient’s health record and prescribe the wrong treatment.  A data-entry clerk in the doctor’s office could make a typo that results in the patient’s insurance company rejecting the claim.

I’m sure you can imagine that I read “Why Health Care Tech Is Still So Bad” with much interest, and I agree with almost every word of it.  The only point that I disagree with is that it’s not enough for physicians to be unable to live without a given technology.  There are many technologies that physicians today can’t live without.  Whatever technology is part of getting the user experience of healthcare right has to make the whole process better for everyone, not just the physician.  If my doctor thinks the technology that gives her my health record is something that she can’t live without, that is almost useless to me if she refers me to another doctor who can’t access that health record.

There are too many moving parts in the system, too many stakeholders.  It’s not sufficient to get it right for just one of them.  We’ll probably get there in a piecemeal fashion, improving experiences for different sets of stakeholders at different points.  We can’t stop because we’ve gotten it right for the physician.  The user experience of healthcare goes far beyond the physician.

  1.  I’m being lazy here, there’s also public payers like Medicare or the Veterans’ Administration.

cultural shifts

I often get asked about the difference between my previous employers, all software companies, and my current employer, a biotechnology company.  There are so very many differences.  One that I feel every day is the knowledge that Genentech has very sensitive data.  As a result, we have strict corporate policies that cover a wide range of areas like physical devices and data retention.  I even have a separate corporate cell phone now.

It’s easy to see why we have such policies.  Consider this article from the Washington post about healthcare hacks.  It points out that some of the data loss has been from a stolen laptop or inappropriate disposal of paper records.  I thought I used to be nervous about losing my corporate laptop; the stakes are a lot higher now.  I was already the type who rarely printed anything out, and put anything that I did print straight into the confidential shredding bins once I was done with it.

I’m now even more careful with my devices and data.  I print less than I ever did.  I don’t even have a filing cabinet, which forces me to ensure that anything I do print is handled appropriately immediately.  My awareness of security, both physical and data, is so much higher now.  I’m also thinking more about the user experience of security and what we can do to engender better security practices.

“beyond the diagnosis”

In coming to Genentech and applying my user experience skills here, one of my first realizations was that a patient’s journey doesn’t begin with diagnosis, and it doesn’t end with the completion of treatment.  It begins with the early symptoms that the person might not even recognize immediately.  Getting to a diagnosis is not the start of the journey; instead, it’s one of the milestones.  For some patients, especially for many of the treatments that Genentech makes, their journey is a lifelong one.  For others, it ends not when treatment is completed, but when they have recovered and completed everything associated with their diagnosis and treatment.

We published an article called “Beyond the diagnosis” which explores a lot of these ideas.  I’m very happy to see others here who are thinking about the whole experience of being a patient.  This passage certainly resonates with a lot of the work that I have been doing in the past few months:

Sometimes the cause of a health problem is clear. Other times, it takes years to pinpoint what’s happening in a patient’s body. The uncertainty associated with noticing early symptoms but not understanding their causes can be as debilitating as a disease itself.

This article is a great way to think about what it means to be a patient, and what we in healthcare can do to improve the experience and the outcome for the patient.

finding my people

A couple of weeks ago, I had the opportunity to attend an event hosted by the US Digital Service.  I got a last-minute invitation to attend, I didn’t have any plans, I didn’t really know what the US Digital Service is but I rarely get email with the seal of the White House on it, so I figured I might as well attend.  It was so very much worth my time.  I learned that USDS are my people, which is something that I’ve been kind of lacking at Genentech.

My new role is pretty awesome.  I work on Genentech Access Solutions, which is a program where we help patients get access to the medicines that they need.  At first gloss, this doesn’t necessarily sound like it’s a good fit for someone with a UX background.  It’s actually a perfect fit.  We’ve got people who understand how to deliver great services to patients and their healthcare providers.  We’ve got people who understand how to run such services internally.  We’ve got an IT team to deliver the software that’s necessary for patients, their healthcare providers, and our internal team.  What they don’t have is an understanding of the overall user experience for each of the different types of people who use our system and services.

On the other hand, I don’t exactly fit in with my direct team, who are all very focused on business and operations.  I don’t exactly fit in with the IT team either, who are very focused on delivering a solution to my team.  I’m the one who’s tasked with understanding the experience of everyone who comes in contact with our system and services, and ensuring that we’re delivering the right user experience for each of those groups.  Patients have different needs than healthcare providers, and both have different needs to our various internal users.

From a UX perspective, this all makes perfect sense.  As a UX professional, it’s my job to understand not just what people do (or don’t do) with our software and services, but the context in which they do it.  I have to understand what they’re really trying to accomplish, and what else they’re using to accomplish it, what works and what doesn’t about their current method, and design a solution that meets their needs.

I’ve spent my time so far getting up-to-speed on Genentech and Access Solutions: what we do, how we do it, who interacts with us.  I’ve spent some time in the offices of healthcare providers, talking to everyone from doctors to nurses to office managers to front office staff to billing managers.  I’ve learned so much in the past few months.  It’s been amazing.  And I’ve shared what I’ve learnt with my team, to help them see our services through the lens of UX, and to consider ways we can better meet the needs of our patients.

I get to use my UX skills in a way that we often don’t get to.  It’s been fun, it’s been eye-opening, and I have high hopes for the future.  But I also don’t have a built-in UX community that I can turn to.

And then I got to meet the US Digital Service team and hear about projects that they’ve worked on, and suddenly I realized that I’d found my people.  They understood the challenges of doing UX in an organization that hasn’t exactly considered UX before.  They understood the challenges of doing UX in an organization that has deep ties to processes and technology that are often considered outdated elsewhere.  They understood the challenges of communicating about UX in an organization that knows they’re missing something but isn’t quite sure what it is. And they understood how deeply satisfying it is to improve the UX of something that is used by people not because they want to, but because they have a very different driver behind their usage.

There are other UX people out there who are trying to do the same thing that I’m doing.  It was a great feeling.  I’ve already had coffee with a couple of people that I met that night, and it was so exciting to have found my community again.  Thank you, US Digital Service.  You’re doing awesome work.  I can’t wait to share with you the results of what I’ve been doing.

MacIT submissions

I spent most of this morning on one of my tasks as a member of the MacIT advisory board: reviewing submissions.  It’s a hard task: there’s a lot of great submissions, and there’s not room for all of them.  Complicating matters is the need to select not only great individual sessions, but a group of sessions that will come together and somehow create a cohesive conference.

Work is ongoing, so those who submitted ideas will be notified in the coming weeks.  I hope to see all of you in Santa Clara, CA, on July 14-16.

missing album artwork on iPhone

After spending hours figuring out a fix for 43 GB of mysterious “other” on my iPhone a few months ago, I suppose I shouldn’t be surprised that I ran into yet another problem syncing my iPhone and iTunes.

This time, the problem is with an iPhone 6 running iOS 8, and iTunes 111.  I’ve got over 60GB of music on my iPhone.  One afternoon earlier this week, I noticed that after syncing my iPhone, all of my album artwork was missing.  I’ve got album artwork for everything in iTunes, and it was quite annoying to have it go missing.  I tried the basic fix, which was re-syncing the iPhone.  That didn’t work: my iPhone still didn’t have any album artwork.

Next, I decided that I would try to delete the music from my iPhone, and then re-add it.  That didn’t work.  I connected my iPhone to my Mac, unchecked “sync Music”, and then clicked the “Sync” button.  I let it go for 3 hours, and it seemed stuck.  In the Music app on my iPhone, the list of songs was constantly updating, but nothing was actually getting deleted.  So I cancelled the operation, then tried to sync again.  When I did that, I discovered that I had 60GB of “other” on my iPhone.

At least I’ve been here before.  I tried rebooting the phone, and that didn’t make a difference.  I did the same thing as last time: erased the phone and let iTunes restore it.  This time, the mysterious “other” was missing.  Of course, the sync stalled again.  I let it go for about 20 minutes before pulling the plug and restarting the sync.  On the second sync, I had a functional iPhone, but no music.  I re-checked “Sync Music”, and started yet another sync.  A couple of hours later, my iPhone had its artwork back.

All told, I lost a whole evening to this.  Come on, iTunes.  Get it together.

  1. Yes, I haven’t updated to iTunes 12. It’s so unusable, and it’s not like I have a lot of confidence that the problems that I experience are any better.

Miss Manners on women’s pages

I adore Miss Manners, and so it’s no surprise that I find her article looking back on the women’s pages of the 60s and 70s quite interesting.

The women’s section reported the feminist revolution of the ’60s and ’70s when other parts of the paper mentioned it rarely and then only as a joke. The Women’s Strike for Peace was ridiculed as being a bunch of housewives who should have stayed home, but we took them seriously long before their actions grew into the wider youth movement protesting the war in Vietnam.

Her anecdote about asking President Kennedy a question is an excellent one, too.

a Macintosh girl in a Microsoft world

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