We recently sat down with Interop Hero, Catherine “Cait” DesRoches, DrPH, Director of OpenNotes to discuss the industry-shaping role the organization has played in making data transparency top-of-mind for the benefit of both clinicians and patients.

OpenNotes is based at the Beth Israel Deaconess Medical Center in Boston (a major Harvard Medical School teaching hospital). The organization studies the effects of open, transparent communication on patients, care partners, and clinicians, and disseminates its findings. Their work also includes sharing best practices on how to share information.

For more than a decade, OpenNotes has worked with its collaborators to foster and evaluate the spread and implementation of shared clinical notes (“open notes”), and advance healthcare transparency initiatives in the U.S. and overseas.

To understand the unique position they’re in, it’s important to know OpenNotes is not a vendor of any kind. They don’t have an app or a server. They’re a collection of researchers, clinicians, patients and other experts who work together to improve healthcare through increased transparency. All their work is funded through grants, so they don’t have commercial conflicts of interest.

Now, let’s get into hearing about all their accomplishments. Cait takes us back to 2010 when OpenNotes launched a small pilot project at the Beth Israel Deaconess Medical Center, Harborview Hospital, and Geisinger Health System. At that time, 100 primary physicians volunteered to share their clinical notes with patients by posting them to the patient portal. Back then, this was a “fringe” idea and there was a lot of skepticism. In fact, the OpenNotes team wasn’t even sure they’d get clinicians to agree to participate.

Two years later, the results of their small pilot project showed patients loved having that kind of access to their information. They reported benefits like feeling more in control of their health, doing a better job taking their medicines and remembering their care plan more clearly — and they wanted continued access.

Another unexpected result was around the clinicians’ reaction. Initially, they were concerned there would be changes to their workflow and that they’d get lots of calls from their patients, but that wasn’t the case at all. Because their workload was essentially unaffected, the clinicians continued sharing their notes with patients after the pilot wrapped. As a result of their positive findings, OpenNotes received a grant to continue spreading this work, as well as their best practices around dissemination and education.

That small project helped change healthcare forever because in 2021 OpenNotes became law of the land. As part of the implementation of the 21st Century Cures Act, notes are now included in the information that’s made available to patients. To go from a small pilot project based on a “fringe” idea to influencing regulation just 12 years later is an incredible accomplishment. We all know 12 years in healthcare is very, very fast to make a big change like this.

Cait and her team have done a lot to educate patients and clinicians around the importance of data transparency. We were curious to hear how OpenNotes has been able to encourage whole organizations to get behind and advocate for this work.

Cait shares her worry that organizations will comply with the law, but not with the spirit of 21st Century Cures Act — which is that patients should have access to this information so they can make better decisions about their care. She fears that if there’s no real effort from the organization to encourage patients to interact with this information that’s available, that they likely won’t even know it’s there. To help combat this potential obstacle, Cait stresses to organizations that there are many benefits for patients and few drawbacks for clinicians to share information in this way.

“I encourage organizations to shift their thinking away from, “This is just something we have to comply with,” to, “This is something we can really do that will improve care for our patients — and at a relatively low cost for us.” We’re already sending this information to the portal, so the next step is just how do we get patients to use it.”

At that point, she says, when transparency is woven into the fabric of the care an organization provides, patients will understand why they may want to look at this information.

Before the 21st Century Cures Act Interoperability & Information Blocking Rule, they did a lot of talking to clinical champions and organizational leaders. And their strategy was to always have patients with them. Having patients in the room who are able to tell people why that information is important to them, or why they need access to parent’s or child’s record helps shift the conversation away from, “Should we do this?”, to, “How can we do this in a way that really helps?”

Additionally, OpenNotes came to these organizational meetings to stress the understanding that this is an educational process for everyone. Clinicians were first trained to think their notes are for themselves only. They’re not trained to think of patients as end users of that information. This kind of culture change work is hard, but necessary.

On the flip side, patients need to understand what’s available to them. Having materials for different literacy levels and languages are necessary for patients to clearly understand how to access this information (or that it even exists). Cait’s advice to organizations is to not assume your audience knows what you’re talking about.

“That can be one of the shortcomings of how we try to get change to happen — not adequately explaining and bringing people on board with the idea that this actually has a benefit to real humans, and it’s not another sort of whizbang thing we’re talking about.”

Admittedly, the health IT world often operates within its own community with industry jargon and we agree we should be carrying that spirit Cait talks about over into how we engage with patients.

One of the things OpenNotes tried to do was lower as many barriers to adoption as they could. For example, they had all the materials ready (things like emails, posters, etc.) for each organization to brand and hand out to clinicians and patients. That way, the organization didn’t have to spend time thinking about any of those implementation details and logistics. Cait believes the health IT community can do a better job allocating educational resources to help overcome obstacles to adoption.

Education is the name of the game at OpenNotes and Cait had one more project to share with us. Their new project educates clinicians on how to write meaningful notes during times when they’re available to patients. This pilot with Harvard medical students will teach them how to write notes in a way that’s not only compliant, but also shows that they’re partnering with their patients, including those across a number of different cultures.

The ultimate goal at OpenNotes is to get to a place where transparency is simply a routine part of healthcare. To take it a step further, Cait and her team will continue to figure out ways to implement this kind of transparency in a way that gets people excited and using it. And, they’ll keep finding opportunities to capitalize on transparency to help solve real problems we have in healthcare.

“Greater transparency can have significant effects on the safety and quality of care provided. Patients can find mistakes in their notes. Patients can use their notes as a way to remind themselves of what they’re supposed to do in between visits, and those kind of blind spots that clinicians don’t see.”

OpenNotes has a few projects that ask patients to log in after a visit, read their visit note and report back to OpenNotes to let them know if there were errors or difficulty understanding direction listed in the note. That information is then sent back in a feedback loop to clinicians before the next visit to help catch safety breakdowns before they become a real problem. Talk about a very real, tangible way transparency is working toward improved care!

As we wrap up our inspiring conversation, Cait leaves us with a few final thoughts. She acknowledges that this kind of transparency isn’t meaningful unless someone is looking. “Otherwise, we’ve just created a lot of angst for clinicians,” she says. Cait encourages people in this space to think about how they can add this transparency component to the work they’re doing, as they’re doing it. And we imagine she’d like to see that same zestful spirit surround this work that she so clearly has.

Thank you to Cait DesRoches of OpenNotes for sharing her experience and perspective with us!

Learn more about the Interoperability Hero Initiative and check out our third class of Interoperability Heroes.

This post was contributed by Alyssa Foggia-Hamm.