A conversation with Yale’s Harlan Krumholz.

The current medical record system fails to bring together information from disparate sources and, in the end, hurts everyone, says Harlan Krumholz, MD.

Krumholz, a cardiologist and healthcare researcher at Yale University and Yale-New Haven Hospital, is the Harold H. Hines Jr. Professor of Medicine and the director of the Yale Center for Outcomes Research and Evaluation, a unit dedicated to producing innovations to improve patient outcomes and promote better population health. 

The lack of a comprehensive, digital personal health record (PHR) controlled by the patient is detrimental in several ways, Krumholz says:

  • It hurts patients because they don’t have all the information they should be sharing with their clinicians, making them less effective participants in their own health care.
  • It hurts clinicians because they’re operating with partial information, hindering their efforts to understand and treat their patients, and keep them safe. 
  • It hurts health systems because incomplete information causes errors and redundant testing, and stymies efforts to curb costs. 
  • It hurts patients’ relationships with both clinicians and health systems when they encounter challenges in trying to obtain their records. 

Krumholz is leading the initiative at Yale-New Haven Health System, in collaboration with a company he started, to get a PHR up and running. He discussed the topic with Physician Business Adviser in advance of a presentation at The National Symposium on Value Innovation at Yale, April 27-29.

Q: Can you describe the work you’re doing on the PHR?

A: We’ve developed an app that communicates with electronic health records (EHRs), stores the data in a secure, cloud-based system, and enables people to carry their medical records with them at all times on their mobile devices. It’s vendor-agnostic, so it doesn’t matter which EHR a provider is using; the system can take data from anywhere, standardize it, and aggregate it.

And patients will be able to look at everything—notes, labs, images—in a variety of easy-to-use formats: graphs, lists, timelines, dashboards. They won’t have to go through portals to gather information from 15 different places and try to make sense of it.

We’ve been testing prototypes and user interfaces with members of the seven Yale-New Haven Health System Patient-Family Advisory Councils. We’ll begin doing pilots on the units very soon and plan to have the system up and operating by June; by the end of the year, we expect to have 10,000 to 15,000 users on the platform.  

It’s not perfect; it’s not what it eventually will be. But we think it’s going to be transformative by allowing data to be used for quality, clinical care, and research purposes. As important, it will put patients at the center and empower them without burdening them.   

Q: In what ways will patients have control over these records?

A: They will authorize their providers to move data into their cloud-based account and to see the information that’s already there. Of course, the providers keep a copy of their own data. However, the patients, and only the patients, will have a complete, longitudinal record about themselves because data can stream in from the various places at which they have received care. They can share all of it or part of it with whomever they like—a new provider, an out-of-town ER if they’re on vacation, their family.

Patients can also collect and add to the record information about themselves, either through wearable sensors like Fitbits, or by filling out digital questionnaires, or by keeping a digital diary. These systems are easy and automatic—it’s direct deposit of the information without having to go through any other organization or transfer to paper.

When all these data are stored on paper, it’s a burden on everyone. It’s not organized in a way patients can easily sort through, organize, or even understand. And frankly, when someone walks into my office with a big stack of records, I’m glad to have the information, but I sigh because it’s hard to get through all that—even for providers. 

In the past, even when we were able to give patients their data electronically, to let them upload it, nobody really wanted to do that; it was difficult and time-consuming.

Now patients will be able to quickly and easily pull together all their digital information—which is automatically updated every day—from every source so they can use it however they see fit. 

Q: What kinds of uses are you thinking of?

A: Say you’re having surgery and your daughter flies in from across the country to be with you—but then she goes home. Using your smartphone or tablet, you can continue to share with her all the data about your recovery in a dashboard that the system automatically populates. It’s important for people to be able to communicate broadly with their support system.

Or say you’re interested in participating in a study project. You can easily become a data donor, by synchronizing your data with the research database.  

You can also track your own progress toward meeting whatever goals are important to you—for example, weight loss, fitness, lowering blood pressure.

Q: You mentioned that the system is permission-based. But don’t patients already have to give permission for a provider to share their records?

A: Right now, data is leaving healthcare organizations under agreements with vendors providing the organizations with services, which is authorized under HIPAA, but then it’s finding its way into other organizations and being sold and transacted—and all this is happening without our knowledge. 

Some companies say they have millions of EHR records. How did they get those? Who gave permission? Nobody. This new approach is about respecting people’s agency over their health information and fostering trustworthy relationships with them. 

Q: What makes this the right time for the PHR?

A: The forces are aligning to make it both possible and attractive. The technology is already here: the power of the cloud, the advances in cybersecurity. This system is designed to enhance accessibility for patients and the people to whom they grant permission, but to safeguard the data from anyone else. Regulations now are in place that make it clear that people have rights to their data and that they can’t be gouged in terms of pricing; an individual’s own electronic records should be free or extraordinarily cheap. And federal standards for electronic data transfers are evolving rapidly.

At the same time, the patient empowerment movement is getting stronger, with more and more people wanting to participate actively in their own care. I believe giving them their data is important in tipping the balance of power toward them.

We saw how the groundbreaking work that was done on health information exchanges, which were really built for hospitals to talk to other hospitals, could be leveraged for a public-facing service. So we designed the system to enable bidirectional, secure messaging. 

Q: How does that work?

A: When someone goes home following surgery, for example, we can ping them every day and ask them about their pain, their functioning, their sleep, their overall health, and use that information to refine our follow-up recommendations. We also feed that information back to the patient through their PHR, of course, so they can, if they want, send it to their doctors and nurses, rehabilitation therapist, home health agency, or a neighbor or friend who is helping them manage their recovery. 

Now you’ve got a truly data-driven, patient-centered way to understand what a patient’s experience is—and to identify the best procedures, drugs, and approaches to help him get and stay healthy.

The biggest remaining challenge isn’t technological but cultural—getting physicians, administrators, and those in charge of institutional policies comfortable with patient-directed care, transparency, and open data. It’s clear to us is that this is the future and forward-looking organizations will want to embrace this move early.

Q: We talked about research earlier, and avoiding expensive retesting. How else does the PHR enhance medicine? 

A: First and most obviously, it helps us improve the efficiency and efficacy of the healthcare system. It drives us to learn about the real outcomes of our treatment, about what we’re really achieving, about what really works and what doesn’t.

Many studies indicate that people are willing to use their data in research studies if they trust the systems and the intent of the researchers. We are now in a position to learn from the experiences of millions of people, working together as a large, knowledge-generating community, with patients involved in more fundamental ways than in the past. Researchers will foster their relationships with these communities and honor the contributions of their patient partners. Of course, the more people who are connected to the PHR system and participate in research, the more successful we’ll be in achieving new breakthroughs.

If we’re serious about population health management, we have to be able to interact with people, monitor their basic health indicators, and preempt problems—on both an individual level, with the patient’s permission, and, using de-identified data, in the aggregate within the safety of their PHR cloud.

But the PHR is also is the real path to patient engagement. We can hand-wave at all these other strategies we’re trying, but we’re not truly engaging until we give people their data and help them use it in meaningful ways, listen to them when they share information with us, and respect their rights to control all their data and information.

Q: What can physician leaders do to advance this movement?

A: For one thing, they can encourage care teams to engage with the patient-centered movement. For another, they can embrace the power of digital health data. They can work to ensure that their organizations’ IT leaders have the resources they need to keep up with a dynamic tech landscape and to adopt the newly emerging standards that will make data more secure and available to everyone.

Q: What would you like other provider organizations to do if they’re interested in connecting with your PHR system?

A: Call us! Our number is 203-900-4846.

Lauren Phillips is president of Phillips Medical Writers, Ltd., Bellingham, Wash.

Interviewed for this article: Harlan M. Krumholz, MD, SM, leading cardiologist, healthcare researcher, and patient advocate, Yale University and Yale-New Haven Hospital.

Publication Date: Monday, March 21, 2016