Jan Oldenburg, senior manager in Ernst and Young’s healthcare practice, had come to the annual meeting of the Health Information and Management Systems Society in Orlando, Fla., to deliver a lecture on “What Do Consumers Really Want from Personal Health IT?”

What she hadn’t anticipated was a proposal from the Office of the National Coordinator (ONC) that would dilute the MU stage 2 mandate that 5% of patients view, download or transmit their records digitally; and 5% email or secure-message their provider. As revised, the proposed rule would require that just one patient do the above.

“Guess what?” Oldenburg said.  “One patient isn’t enough. One patient doesn’t require you to make it an organizational priority to engage patients.  One patient isn’t sufficient to demonstrate that you are doing the organizational and cultural change necessary to embrace this.”

Quoting former ONC director Farzad Mostashari, MD, she shared the news that two thirds of organizations that have successfully passed MU 2 have circumvented the view/download/transmit requirement by invoking the exception granted to organizations that claim not one patient has asked for digital access to their records.

“I don’t believe that,” she said. “I don’t believe that is what our patients are telling us.” She and several others are spearheading an effort to lead a national patient call-in to healthcare providers asking for digital access to their records. “Some of you, at some point, will hate me for this.”

Rising expectations

If Oldenburg seems impatient, it’s because she has spent the past 20 years thinking about what consumers want from personal health IT going back to a senior leadership position in the mid-‘90s in Kaiser Permanente’s web and mobile practice division. While she acknowledges that strides are being made by some organizations, progress toward digitally engaging patients has been woefully slow.

“The high cost of disengaged consumers affects everybody,” she noted. The annual cost of lifestyle diseases in the U.S. is $153 billion annually; medical costs related to obesity are $190 billion annually; and only 50% of US adults get the recommended amount of exercise, she said.

Multiple consumer trends are driving demand for a more digital patient experience. “Your patients are expecting consumer quality experiences in healthcare that reflect the kind of things that they can do digitally and the kind of services they get online and offline from other services,” she said.

For instance, Mint.com gives consumers access to a consolidated view of their financial information, no matter how many financial institutions it lives in. “Are we doing that in healthcare?” she asked. “Are consumers expecting it? Absolutely.”

Amazon and other retailers provide personalized service, in the form of recommendations based on your personal history with the company. “They are expecting personalization, the way the get it in a retail shop,” she said.

Companies like Samsung and Apple are entering consumer-generated healthcare and collecting and consolidating data, further raising the expectations of your patients. “That’s where the expectations are changing,” she said. “Not because of the things your competitor down the street is doing.”

Google, for instance, is testing a program to connect seekers of health information with a relevant telehealth encounter: For people searching on, for instance, knee pain, an avatar pops up and asks if the seeker would like to speak to a physician about that.

“That’s exactly the kind of services that are more convenient, more digital and address people where they live, that we are starting to see permeate people’s expectations of what they should get in healthcare,” she added.

Impact all three dimensions

Healthcare consumerism and patient engagement can impact all three dimensions of the Triple Aim, Oldenburg says. Beyond improving the actual experience of care, it can improve the health of populations and reduce per capita cost.

Disengaged patients are more than twice as likely to experience a medical error; poor communications with physicians is more rare with an engaged than non-engaged consumer; and patients who have good communications with their physician are less likely to sue them. “Those are the kinds of things that affect the bottom line, especially if your organizations are struggling with moving toward value-based care,” she said.

When Boston, Mass.-based Beth Israel Deaconess first introduced the concept of the OpenNotes project, which gives patients access to physician notes, physicians were skeptical and patients expressed interest. But the project, which included three health systems in rural and urban settings, has proven that patients can function as the provider’s partner.

 “They found that people who were looking at their records were more up to date on their preventive care,” Oldenburg said. They were ensuring that follow-up tests were being ordered, and wondering if suspicious “lump or shadows” seen on x-rays should be followed up on. “They were helping make their care safer,” she said.

There also is plenty of evidence that engaged consumers actually cost less, Oldenburg added. Fully engaged consumers pick less expensive treatment options, tend to have fewer readmissions and, if chronically ill, don’t end up in the hospital as often.

“For all of these reasons it matters, not just because MU is—or was—demanding it, but because it’s going to affect your bottom line, your success and your patients’ loyalty,” she urged.

Building a program

What do consumers want from personal health IT?

“Far and away, the most important thing to people is having all of their clinical data in one place,” she shared. “No one is doing a very good job of helping people get their records or consolidate them. Whoever figures that out and makes it simple is going to be a walkaway leader in the market.”

They also want more ways of interacting with their care teams and not just through email and phone calls.  “They want chats, video visits, Facebook direct messages and other very direct digital tools,” she said.

Survey and in-depth interviews by Oldenburg with patients revealed that consumers also prize honesty, respect and partnership from their care givers, as well as honest and transparent pricing and billing.

The very first thing providers should do to build their programs is look closely at the digital services they are providing, Oldenburg suggested.

“Are you doing base meaningful use?” she asked.” If not, please keep working on it, but think beyond basic meaningful use, think about how to integrate capabilities so that we are making it easier for people to draw conclusions.”

Additional opportunities lie in the following areas:

• Personal healthcare data analytics. “Think about personal health analytics,” she said, “analytics that bring it to me, to the power of one.”
• Incorporating both mobile and patient-generated data into your programs. “You don’t know what it will bring, but start experimenting,” she urged.  “Give it the old college try, figure out how you can make sense of that, what value it brings and how it can induce you to treat people differently.”

The very best way to find out what patients want is to ask them. Build a patient advisory counsel and make sure it has the ear of your senior leadership. Pay attention to what they are saying on social media, in survey data and complaints. “Situating the patient advisory counsel at the bottom of your organization where nothing is done about the insights they bring is almost worse than not doing it at all,” Oldenburg said.

Overall, patients and caregivers want the healthcare system to reflect listening in how applications are designed, Oldenburg emphasized. “They want their care interactions to be both more compelling and more convenient,” she said. “They want applications that don’t just give them access to their clinical data, but help them to build personal connections.”