HIE and the 'learning healthcare system'

The notion of “health information exchange” has 
been around for decades, and we have tried many approaches. Yet our healthcare system is struggling to foster the kind of exchange that will truly drive better care and smarter spending. Entrenched payment policies that do not reward better health outcomes or coordinated care continue to hold us back. We are making progress, but many healthcare organizations today still treat health data as a close-hold business asset, when it should be treated as a public good.

We know that consumers want health information technology. According to a nationwide survey released by the National Partnership in December, patients overwhelmingly believe that electronic health records are essential to making sure providers have timely access to information that can help avoid medical errors and repeat tests.1 Consumers also want and use online access to their own health information, largely through patient portals.(Please wait for re--direct) Almost nine in 10 patients who have such access use it, and it has a significantly positive impact on patient engagement, better care and improved outcomes. Notably, individuals who use patient portals with some frequency are dramatically more likely to say it motivates them to improve their health. 

          

We also know that the role of consumers in healthcare is changing rapidly, facilitated in part by these emerging technologies, along with evolving economic incentives and rising consumer expectations.                               

These forces are converging, positioning consumers as a potentially potent force for change that can dramatically reshape the way we share and use information in healthcare—if we can make the process of downloading, managing and sharing health information easy, private and secure.

What does it take to unleash this consumer potential? Let’s look at how our system works today. In my case, I have a primary care physician who uses an EHR. I also have a high-deductible health plan, which means that I often seek out care from places that have published price lists and are convenient—like a web-based service that, earlier this year, allowed me to “see” a doctor online on a Sunday morning for just $49. As a result, healthcare data about me exists in several different places—with my doctors, my health insurer, MinuteClinic, my web-based doctor service, and more. This is not usual for most Americans. All of us have data spread across a patchwork of providers and systems.

But few if any of these systems talk to each other, which means that no single provider can see a complete picture of my care. So how can I, and the millions of consumers like me, become a force for change that drives health information exchange in the marketplace?

If I could gather my data electronically from all of the healthcare entities that hold it, and use a safe and secure app to store it, then I could share it with any one of my healthcare providers, giving them a much better view of my health and my care.       

The fact is, as the patient, I am the only one present at all of my healthcare encounters. So I can potentially amass more data, more quickly and more comprehensively than any single health care entity can today, because I know where it all is. And, in theory, I know how to get it. If I have the data, I can spot errors, avoid repeat tests, detect fraud, help facilitate coordinated care, and much more. I can be the curator of my own health record, sharing it where and when it is needed to improve my care, and for other important purposes like research into precision medicine.

We are close to achieving this vision; both the policies and the technologies exist. But we aren’t there yet. I learned this the hard way when I requested my data from my PCP eight weeks ago. Because the practice participates in Meaningful Use, I should have been able to download my data directly from the patient portal. That is due to an important federal requirement that stipulates patients must be offered online access to view, download or transmit their health information to a third party. Unfortunately, the patient portal was broken and the practice had no plan to fix it.

So I decided on another approach that few consumers—and it turns out, few providers—know about. Under the HIPAA amendments made by the HITECH law, I now have a legal right to an electronic copy of my health information. I can exercise this right with any covered entity that holds data about me, as long as they can produce the data electronically. And if they have a Meaningful Use-certified EHR, they can. So I asked my PCP’s office for an electronic copy of my health record.

After convincing them that I wasn’t trying to change doctors and just wanted my record electronically, they told me they “don’t do that;” they only offer paper copies. I told them about my legal right to an electronic copy since they have a certified EHR, and they again simply said they don’t do that.

So I returned a few days later with a copy of the Federal Register, demonstrating my legal right under HIPAA to an electronic copy. Over the course the following week, and many phone calls back and forth, the practice staff figured out how to meet my request. They created a text file, and a second file in a format called CCR, which stands for Continuity of Care Record, and placed both files on a CD-ROM that they left at the front desk for me to pick up.   
     

I quickly learned that having my record on a CD-ROM wasn’t very useful. I could read the text file (once I bought an external CD-ROM drive), but text files aren’t very actionable. So I did what anyone would when faced with a problem: I downloaded an app. The app used the CCR file to summarize and display my medical record in an organized way that I can understand.

The app is available on the Google Play Store  or iTunes

This simple medical records request was a big hassle—it caused a lot of friction even though I was simply requesting information to which I am legally entitled—information that is an essential part of my health and care. It required multiple trips to the doctor, several aggravating phone calls, legal and technical knowledge, and persistence. Most consumers won’t have the resources to persist and eventually succeed.       

These are challenges, to be sure, but they can be addressed in the very near term. And if we overcome them, the potential of consumers to unravel the knot that binds our health data in silos is enormous. If consumers can make a concentrated tug on the rope and demand their data, starting right now, it can enable systemic change.

To do that, we need to take the friction out of the process for consumers. There are a range of actions we can take in three broad areas over the next 24 months to achieve     change. The good news is that none require legislation. They can all be done by administrative action, by the private sector or with public-private collaboration. However, a little nudge from Congress can help:

1. Equip consumers with the tools and awareness they need to exercise their rights to their digital health data.

Make the process of requesting data easier. How can we automate it? A small group of leading experts, consumer advocates and former policymakers are catalyzing action in this area right now. Developers are working on tools such as the Vocatus tool, which enables consumers to request their health data online. Others are working to fix problems with patient portal download features.

2. Give providers the tools and incentives to make consumer use of digital data the norm in healthcare.    

Work through HHS to educate providers about how to meet the demand for digital health information—through patient portals and through other means of downloading data such as Blue Button (which Medicare and the Veterans Administration already use), or the Direct protocol—a secure email link between patients and providers. Use the federal EHR certification program to create the capacity for EHRs to incorporate consumer-generated data and make it easy for providers to analyze and act on.

3. Advance federal policies that enable consumers to routinely request, download and use their own health data in private, secure and valuable ways.

Finalizing the proposal to include open Application Programming Interfaces (APIs) in the federal EHR Certification program. APIs will help break down information silos in healthcare. Preserving and strengthening the Meaningful Use view/download/transmit requirement, most commonly met by offering patient portals which deliver functions patients want like secure messaging with their providers, online medication refills and data downloads. We must preserve both the requirement that the technology is in place, and the requirement that a percentage of patients use it at least one time during the reporting period. Regardless of whether the number is five percent or something else, CMS’s recent proposal to drop this threshold to just a single patient will completely undermine efforts by consumers who want to have and use their data. Requiring providers to actively engage with a percentage of patients is an essential mechanism for changing consumer expectations and enabling consumers as a force for change.

Christine Bechtel is an advisor for the National Partnership for Women & Families, president of Bechtel Health, and chair of the Consumer Work Group of the Health IT Policy Committee. This was adapted from her testimony before the Senate Committee on Health, Education, Labor and Pensions on June 10, 2015.