Mr. Obama, Tear Down This Wall(ed Garden)

Today, I participated in a meeting at the White House described as an "expert roundtable on patient access to health data"  hosted by Todd Park (Chief Technology Officer of the United States), Farzad Mostashari (the National Coordinator for Health Information Technology), Leon Rodriguez (Office of Civil Rights) and Peter Levin (CTO Veterans Administration).

Being at the White House within a week of the 25th anniversary of President Reagan's famous "Mr. Gorbachev, tear down this wall" speech at the Brandenburg Gate, it struck me that tearing down a wall was a good metaphor for what was the goal of today's meeting. In many respects, healthIT is similar to the "walled gardens" that persisted in mobile phones until they were torn down by the iPhone and Google's Android. Just as the wireless carriers had their own proprietary environments for apps, health systems (and their EHR vendors) severely limit what can tie in with their systems directly impeding patient access to their health data.

The desired outcomes of the White House roundtable were:

• Identify and prioritize a list of standards and best practice activities needed to advance patient and consumer access to health data
• Establish a process for addressing the priority standards activities
• Galvanize participants to engage constructively in this process

I'll outline below some of what I heard and shared at the roundtable and my big picture take-aways. Please share your comments below on what else should be done.

Meeting Kicked Off With Passionate "ePatients"

There was a tremendous amount of passion to solve these issues. The most compelling facet of the entire meeting was Nikolai Kirienko, Hugo Campos, Regina Holliday, and Dave deBronkart sharing their experiences as patients (or caregivers). If people weren't motivated already, this put more fire in their belly to solve this important issue.

Lessons From Tearing Down Wireless Carrier Walled Gardens

I believe there is a parallel to how the wireless companies benefitted when their app store's walls (i.e., walled gardens) were torn asunder. By no means is it an uncontrolled free-for-all . Apple, in particular, has demonstrated that a mostly open playing field with some control benefits the entire ecosystem. Likewise, a broadly competitive app environment will deliver the greatest benefit to health systems. The key question is how to make that happen.

Follow the Money: Payment Leads to Interaction

To open patient access to health data, technology standards and Meaningful Use are necessary, but they aren't sufficient. The biggest driver of behavioral change for healthcare providers, whether it's a hospital or an individual physician, is if they will get reimbursed for some new activity. Further, as John Moore of Chilmark Research highlighted in the other key to successful provider-patient engagement is clinician interaction with their patients.

The role the government can play is embedded in the video below by the recent past United States CTO, Aneesh Chopra. In a nutshell, if new payments models demonstrate they lead to a better healthcare experience for our seniors, Medicare has legal authority to scale reimbursement throughout the system. As Medicare goes, so goes the overall healthcare system.

Clinician Interaction Leads to Patient Involvement and Greatly Improved Health Outcomes

Nothing would tear down the walled gardens that keep patient data locked inside health system silos faster than reimbursement reforms. The legacy "do more, bill more" reimbursement model does nothing to incentivize healthcare providers to weave their patients into the care process. In fact, the opposite is true. In contrast, as I outlined in Patients Are More Than A Vessel For Billing Codes, "the most important member of the care team is the patient." Ironically, typical proprietary EHR Patient Portals are largely provider centric touting features such as bill payment as a primary benefit — I'm sure that is tremendously exciting to patients.

The core insight that has led to the greatest improvement in health outcomes (see Patients Are More Than A Vessel For Billing Codes for more) has been that for chronic disease management (75% of all healthcare spend), it is the individual or their family who is in control of the decisions that drive outcomes. In other words, it's not the clinical team who decides whether to fill and complete prescriptions, make dietary and exercise changes and other lifestyle choices. However, clinicians can have a huge effect with the right reimbursement scheme and patient interaction.

Three Steps to Improved Health Outcomes by Paying for Value Over Activity

As the largest payer of healthcare services, the government has a pivotal role to play. At the same time, in aggregate, employers are the largest payer of healthcare services and often usually move faster than the government. As detailed in Strategic Healthcare Investors' Investment Thesis, IBM and half the Fortune 100 have recently begun changing what they will pay for. Their DIY Health Reform efforts are designed to pay for value over activity can complement what the government should be doing.

The following are the three steps the government should take to open up patient access to health data and accelerate the shift to fee-for-value over the "do more, bill more" reimbursement model that is bankrupting the country:

1. Catalyze it via strong requirements for Patient Engagement in Stage 2 of the Meaningful Use incentive payments. The best summary I have seen was the comments submitted by Health Record Banking Alliance (HRBA PDF file). I would add one item drawing a lesson from the success of the web in supporting heterogeneous systems. A simple standard/protocol, HTTP, fundamentally altered the dominant architectures that had persisted with mainframes, minicomputers or online services. Whether it was IBM, DEC or AOL, the front-end and back-end were controlled by one company. Thanks to HTTP's decoupling effect, the enormous benefits of the Internet were realized. Today, healthcare is mired in the DEC/AOL era with most of the technology stack controlled by a limited number of vendors. Through Meaningful Use incentive payments, EHR vendors have been enriched. The least the government should do is ensure those systems enable third party systems to easily plug into their back-ends (with appropriate controls) not unlike what HTTP enabled.

The biggest piece of the meeting was working through the "HTTP" equivalent with great input from a variety of experts. There is a lot of momentum behind an expanding concept of "Auto Blue Button" representing auto download and transmit of a complete record the patient (or proxy) can readily access. Naturally, there is detail to be worked out within this topic such as items such as Identity Management. There will be an open process that Farzad Mostashari's organization will be running. They will be posting a blog shortly on this topic.

2. Amplify it by leveraging the government's bullypulpit. As outlined in the aforementioned letter from the HRBA, most healthcare organizations don't realize that if they withhold patient information, they are in violation of HIPAA requirements. Making these HIPAA violations available to the public would help inform patients of providers that don't have their best interests in mind and encourage providers to be more patient centric. During the meeting, Leon Rodriguez shared that an organization was fined $4.3 million for failing to provide patient records. The government's megaphone would also broaden exposure to new reimbursement models that can be deployed more broadly. Physicians obviously care greatly about having their patients be as healthy as possible.  Once financial incentives align with healthy outcomes, they are more than smart enough to figure it out. The byproduct is greater patient involvement.

3. Sustain it with reimbursement reform. As mentioned above and in the video, reimbursement shifts are accelerating. To my knowledge, Medicare only has one reimbursement that is focused on proactive wellness versus reactive services (Annual Wellness Visit introduced in January 2011). Even this lonely reimbursement isn't widely known or utilized. Virtually all outcomes-based payment will naturally require patient involvement to be successful.  Since the architecture to engage individuals in their care is fundamentally different than architectures to optimize billing (the core purpose of legacy healthIT), it will create demand for new systems.

The good news is the healthcare providers with the most impressive improvements in health outcomes haven't built that success around expensive integrations with legacy healthIT. Rather, they have recognized that Communication is the Most Important Medical Instrument. Information in legacy healthIT has little to say about the decisions the individual (or family member) makes that drive health outcomes. Thus, when reimbursement reform is in place, success has a lot less to do about internal workflow in health systems that represent less than 1% of a patient's life. Rather, outcomes are driven by the 99+% of a person's life when they aren't with their clinical team.

Conclusion

As much as I'm a believer in the power of technology to disrupt industries, healthcare is unique with its 3rd and 4th party payment models. Without changing provider reimbursement, the best technology in the world will be stymied. My hope is that 25 years from now, one of President Obama's biggest accomplishments will be tearing down the walled gardens of healthcare and giving people a voice in the healthcare system and that his efforts will result in much greater value realized from our currently highly inefficient healthcare system.