Collaborative care: Improving information exchange and adherence

*How Michael Schultz, a hemophiliac, created an iPhone app that helps physicians and pharma make patients healthier*

How Michael Schultz, a hemophiliac, created an iPhone app that helps physicians and pharma make patients healthier

Kids with hemophilia get used to fielding lots of questions from friends.

Does hemophilia mean you'll bleed to death if you scratch your skin? (Answer: No, the problem is with internal bleeding.)

If it's internal, how do you know it's happening? (Answer: Have you ever jammed your finger playing basketball, and it swells up so bad you can't move it? That's what a bleed feels like.)

So what are you supposed to do about it?

For years, Michael Schultz answered that last question as all dutiful hemophiliacs are supposed to.

You take your infusion and then record it in a log with all the other infusions you've taken that week, that month, that year.

By the time he got to college, however, Schultz had come to a sad realization.

The log he had carefully kept since childhood to monitor his moderate hemophilia really wasn't serving a purpose.

I wasn't using it; my doctors didn't use it; my nurses didn't use it, Schultz says.

I'll come in for a check-up and give them 50 pages of log and they'll say, Oh great,' then flip through it for literally five seconds and say, Looks good, here you go.'

At best, Schultz found, they took a photo for their records and filed it away, rarely if ever to be viewed again.

Which is a shame, because the information stored in those logbooks can offer critical insights into a hemophiliac's conditionhow many bleeds they've experienced, where their target joints are, if prophylactic treatment is the best option.

So when the iPhone came out, Schultz, a communications major at Western Kentucky University with a fondness for Web development, saw an opportunity to make an app that improved collaborative care for the hemophilia community.

There's so much information we can gather and infer from a log, but there's no clear, concise way to look at it and consume it quickly, Schultz says. That's what Hemolog allows you to do.

Launching the Hemolog app

Schultz has spent the past 18 months developing Hemolog, a digital template that makes it easy for hemophiliacs to log their infusions and share them with physicians and caregivers.

The standard way to keep a log today is to print out Excel spreadsheets and log infusions by pen or pencil.

The logs get long, are annoying to carry around, and can be taxing to keep track of over time.

With Hemolog, patients can simply log infusions on an iPhone, iPad, or iPod Touch and send emails to hematologists and caregivers with updates.

You're able to look at a page on your iPhone and in a couple seconds understand five different things about the patienthow many bleeds they've had per year, per month, per week, and you get to see what their target areas are right there on the page, Schultz says.

There's no work that has to be done by the hematologist. It's like a cheat sheet to a quiz.

The app is currently in beta testing and will be a free download in the Apple App store soon.

Collaborative care is better care

Schultz believes that if hematologists can get a personalized snapshot into each of their patients' lives, it will elevate the standard of care for everyone.

In an ideal world, hematologists and nurses would have ample time to spend with each patient, learning the nuances of their diseases and the best ways to tackle them.

Unfortunately, hematologists (like all physicians, these days) have a steadily increasing patient load and less time to treat them.

As a result, a lot of hemophiliacs remain ignorant of the best information out there for their particular condition.

And in the world of hemophilia, that often leads to joints breaking down sooner than they should; at just 24, Schultz already has painful arthritis in his ankle, a condition he believes could have been avoided if he had been made aware of prophylactic care and why it suited him and his lifestyle.

Seeing that some of the problems hemophiliacs suffer from were caused by not knowing and being ignorant of the information is heartbreaking, Schultz says.

It's not their fault; the problem was their doctor, their healthcare company, their pharmacy, somebody not telling them what was available. That should not happen.

Schultz hopes Hemolog will help change this.

In addition to providing physicians with more information about their patients, the app will provide information page links to sites with information for the entire hemophilia community.

Pharma's role

Stories like Schultz's illustrate why pharma companies should recognize the importance of collaborative care.

The more patients and physicians can interact and exchange information in a transparent environment, the healthier and more adherent patients will become.

Sponsoring personalized disease forums for doctors or initiatives within patient groups is a good place to start. (For more on patient groups, see How patient advocacy groups can boost patient compliance' and Compliance and concordance: Good for patients and for pharma'.)

In Schultz's case, he has benefited directly from pharma support.

He sent letters out to various firms in the hemophilia industry, and Affinity Biotech offered to fully cover the cost of Hemolog's development.

Affinity did this without claiming ownership of the app or asking to be identified as a sponsor.

Schultz, it should be noted, thought this was totally insane and so gave them some recognition anyway.

Nonetheless, Affinity recognized that if hematologists and hemophiliacs started to use this app, it would move the whole community forward, which means everyone is happierpatients, physicians, caregivers, and pharmacies alike.

Even if Affinity doesn't get any recognition, their customers are better off than they were before, and so everybody benefits, Schultz says.

And when everybody benefits, everyone's margins go up, and everybody makes more money and gets more patients.

Since you're here...
... and value our content, you should sign-up to our newsletter. Sign up here