A new advocacy group launched at HIMSS13 in New Orleans earlier this month. The imPatient Movement wants to change the conversation about patient engagement – giving voice to healthcare consumers and pushing for more fruitful data exchange between patients and their physicians.

With Stage 2 meaningful use set to make patient empowerment a centerpiece, the new organization, founded by NoMoreClipboard, Microsoft HealthVault and Indiana Health Information Technology, Inc. – and actively seeking new members – seeks to "empower patients, healthcare providers and health IT organizations to collaborate and advocate for swift and meaningful action in making electronic health information accessible, interoperable and actionable."

So far, the initiative has found friends in high places.


"The imPatient campaign recognizes what we firmly believe – that both patient and provider attitudes must change in order to achieve the full potential of eHealth, and that both parties will benefit from having greater access to and use of electronic health data," Farzad Mostashari, MD, national coordinator for health information technology, said about the group in a press statement.

Healthcare IT News spoke with Jeff Donnell, president of Fort Wayne, Ind.-based NoMoreClipboard, about the imPatient Movement, about physician resistance, and about the ways consumer engagement is gaining momentum in healthcare.

Q: How have attitudes with regard to patient engagement evolved in recent years, from your point of view?

A: There's been a significant shift in attitude. As someone who's been working around patient engagement for seven or eight years now, it's gone from, "Why are we even talking about this? Why is it even important?" – or, "Maybe someday, but the time is not right" – to recognition that this is important.

Q: What are the grounds for physicians' objections when you hear words like that?

A: They say, "This may be a good idea, but it's not right for my patient population – I see safety net patients, or most of my patients are senior citizens," those sorts of things. Sometimes it's, "Hey, frankly, I don't see a big demand for it." On the provider side, a lot of it was, "This is new, this is different." It's a fear of the unknown.

There are concerns such as, "If I suddenly start to communicate with my patients electronically, am I going to be inundated? If I turn on secure messaging, are my patients going to be sending me secure messages at all hours of the day and night? Am I going to have to spend two hours every night responding to these electronic messages from patients?" There are concerns like, "How do I know when the patient comes in and says, 'I've created a personal health record,' how do I trust the data that the patient provides?" Also, "How do I know that the patient is even going to be equipped to know what to do with the data I provide? When I give my patient a copy of their record, will they even understand it? Will they have concept of their value?"

Any time you have something new or different, people are going to be skeptical. But now the conversation has changed dramatically to, "We get it. Number one, we recognize that this is meaningful use required. So we recognize that electronic patient engagement is something that we need to do if we want to get stimulus money." And if you look at Stage 2, those requirements ratchet up.

But also, more and more providers are telling us that, "Hey, I've got patients coming in who have created a personal health record. Or they come in and they've already done a ton of online research and they show me the apps they're using on their phone to track blood pressure." There's sort of a recognition that, "Whoah, whoah, whoah, our patients are getting out ahead of us on this stuff. We'd better catch up, or we're going to get left behind."

Q: So how did imPatient come about? And isn't Microsoft HealthVault supposed to be a competitor of yours?

A: It's definitely a rising tide lifts all boats type of thing. At the end of the day, we're all trying to do the same thing: We're trying to promote electronic patient engagement. We look at ourselves, HealthVault and a few others as the leaders in the marketplace. And if we grow the size of the market segment then we all benefit.

But more importantly, if we can get consumers and clinicians to share data electronically, we're going to see improved patient care. As we conceived this idea, it very quickly became apparent that it should not just be a NoMoreClipboard thing. This really ought to be a wider effort with a lot of stakeholders.

There were really three things that got me to think about starting this movement. The first was that we did research last year with our consumer users, and then we heard over and over from people, we love the product, but I took the time to create a personal health record for myself and my family, got all this data, put it in, and then went to my doctor, who said, "Well, that's nice, but here, fill out my registration form."

Not only was that a big source of frustration, but over and over we had consumers say, "Can you equip me with tools to help me talk to my doctor about this?" So when they say, "Hey, I still need you to fill out my form," or, "I can't or won't accept this," I need to know what to say to them. We've got this army of consumers out there that are interested in using these tools. How do we mobilize them? How do we turn them into advocates?

At the same time, as we go out and talk to clinicians, to practice administrators, again, we hear the same things over and over: a lot of fears, a lot of questions, a lot of concerns. And we needed a way to address those. Ideally, how do we get the provider community, the people who already get it and are involved in patient engagement, to share what they've learned with their colleagues?

The third point was that we saw, I think all too often, that there was this confrontational or adversarial relationship set up between the consumer and the clinician. And that's not healthy. You have consumers out there that are really frustrated, and they paint the clinician as the enemy: "I wanted my data and my doc wouldn't share it with me." Ultimately, we don't want confrontation, we want everyone to work together. We can serve as that voice that brings the consumer and the clinician together, gets them talking and provides both sides with tools and education.

So we worked with Microsoft HealthVault. Also our state designated entity, Indiana Health Information Technology, Inc. – they've been very supportive of electronic patient engagement efforts. We got a lot of support from the folks at ONC, from their consumer engagement group, Lygeia Ricciardi [Acting Director Office of Consumer eHealth] and Farzad. They're really trying to promote this, so they said, "We're on board."

We want to educate people, give them the tools. People can go to impatientmovement.org and print out a form that they can bring to their doctors. That just gets a dialogue going. If we can get consumers to say to their physicians, "Hey, this is important to me. I'm looking into the providers I choose, and this is one of the evaluation criteria." We're starting to hear about that: When providers contact us, we always ask, Where did you hear about us? The number one place physician practices and hospitals hear about us is from consumers. That was a big lightbulb for us.

We also, at the site, want to give patients a place where they can share their stories. Not only their frustrations, but also some of the good things that happen when they start to share data. We're also then giving providers a place where they can share with their colleagues. We're getting provider stories where they share their successes and offer advice to other providers: "I used to be just like you. I used to want nothing to do with electronic patient engagement. But we started to do it, and not only did the world not end, but some really good things began to happen.

Q: Farzad Mostashari makes the point that, "patient and provider attitudes must change." That's easier said than done. What has to happen for it to really take place? Let's start with providers: Can you see their point, understand why they're wary?

A: Oh, absolutely! I fully understand. When we go in to meet with a provider about NoMoreClipboard, I know that at least 50 percent of that first meeting will be all about answering their questions and addressing their concerns, helping them overcome their fear and skepticism.

But here's the good thing. Number one, it's easy to overcome those things. We can say, "Here's our experience. Here's what we're hearing from providers who have done this, and almost every provider who decides to take the plunge ends up having the same story: I expected all this bad stuff to happen, and none of it did. When we turned on secure messaging, guess what, we didn't' have this onslaught from consumers. And in fact, it started to improve efficiency, because things like appointment requests and refill requests that historically took up a lot of time on the phone and a lot of back and forth, as we got patients to do that electronically , we became more efficient."

Also, there are some interesting unexpected benefits. Like, when you take data out of your EHR and give it to a patient, patients will find errors! The first time you get a call from a patient who says, "I saw that data you sent me, and I'm not taking that medication anymore, or you got the dosage wrong, or I never had that condition…." At first, you're like, "Whoah, whoah, whoah." But then you realize, "This is a good thing. The person who is the ultimate source of truth is now engaged. They're looking at their record and pointing out inconsistencies."

But what's really amazing – and physicians are surprised – it's quite often the patients that are the least compliant, the ones they never thought they'd get to follow a therapeutic regiment, who start to use these tools, and it really makes a difference. They start to see that not only are these patients more engaged, but they start to improve clinically. People who were historically in and out of the office or the ER all the time actually start to do better. You may have to invest a little time up front to get them up and running, but on the back and they do better.

Q: To really reap the benefits of patient engagement, don't we need to get beyond the people that are naturally inclined to be engaged, that self-selecting sample, and really reach that segment of the population that doesn't care so much about their data but really needs to be reached?

A: Yes, and I think what we're finding is, certainly the people who are going to be most interested in using these tools are people who have a chronic condition themselves, or they're helping a family member or a loved one manage a chronic condition. Those are also the people who can probably benefit the most.
We just published a case study with a cardiology practice that decided to implement a personal health record for patients that had recently undergone cardiac revascularization, so they had a stent put in, or they had a bypass. The average age for these people was between 66 and 72 – pretty much senior citizens.

The attitude, historically, was that these patients will never use these kinds of tools. They're not tech savvy. Well, what they found was that nearly three quarters of the patients, if they provided them with a PHR – set them up with an account and took the time to teach them how to use it – three-quarters were active or very active users. Over a six-month time period, they measured their engagement and also did lab tests. What they showed was that not only did their attitudes and engagement in their care improve, but they also saw clinical improvement and reductions in A1c levels.

As one patient said, "For me, this was the missing piece. I'd always struggled with diet and exercise and all the stuff I needed to do. I never had a way to organize it all. But once I started using the health record, everything fell in place. What's unfortunate, to your point, is that there's still probably a quarter of the patients who logged in once, said, "Eh, I'm not going to use it," and got on with their lives. We still need to figure out how to reach those folks. But the fact that we got three-quarters of a patient population in their 70s to use a tool and use it routinely says a lot about the potential here.

Q: What's been the response since you announced imPatient earlier this month? Have people been receptive? And what's on your to-do list in the coming months?

A: There was a great response at HIMSS. We signed up almost 300 people on the show floor. We've already had several patients submit stories and we're putting those up on the website. We're getting ready to launch a blog, and we've got about a dozen different individuals that are putting together contributions for that. And we've got several other organizations that want to become partners.

The patient engagement market is finally… after pushing the rock up the hill for a long, long time we've kind of reached the crest of the hill and the rock is starting to roll down the other side and picking up speed.

Read more about imPatient Movement here.

[See also: Power to the people! Engaging patients to be engaged]

[See also: Patient access to e-record urgent, advocate tells federal panel ]