We had an inspiring conversation with Maria Moen, Senior Vice President of Innovation and External Affairs at ADVault, Inc., where we discussed the critical work her team is doing to help give patients a voice by digitizing personalized treatment desires and plans.

ADVault, Inc. is a digital advance care planning and advance directive technology platform in more than 50 countries. The company’s mission is to make sure a patient’s medical wishes are easily accessible in situations where they’re unable to communicate for themselves. They partner with various stakeholders to make sure a person’s health care decisions are secure, accessible and available when they’re needed most — when seconds count and minutes matter.

Knowing that standards are the building blocks of interoperability, we wanted to hear about Maria’s work with Health Level Seven (HL7®) and the Advance Directive Interoperability with Fast Healthcare Interoperability Resources (FHIR) Project.

We learn this project, which started in October of 2020, is pioneering the FHIR standards for interoperable data exchange, integration, and the sharing and retrieval of this critical information. Maria and her team are working with the Post-Acute Care Interoperability (PACIO) Project, a collaborative effort to advance interoperable health data exchange between post-acute care and other providers, patients, and key stakeholders across healthcare while promoting health data exchange. All this work happens in collaboration with policy makers, standards organizations, and industry through a consensus-based approach.

“The primary goal of the PACIO Project is to establish a framework for the development of FHIR technical implementation guides and reference implementation that facilitate health data exchange through standards-based use case-driven application programming interfaces.” 

Maria says a vibrant and diverse community of healthcare professionals, electronic medical record and personal health record vendors, legal experts, industry thought leaders and subject matter experts all help inform their work. In fact, The HL7 Patient Empowerment Workgroup sponsored the PACIO Project. This workgroup, established in 2019, was created to make sure patient-focused issues are appropriately represented in all HL7 workgroups, and has a mission to promote and amplify the perspective of patients and their caregivers in HL7’s standards work.

Maria explains how the recent Covid-19 pandemic has brought to light the importance of needing patient records and advance directive information at any given time. She says the pandemic has heightened the sense of awareness that anyone could find themselves in a position where they need emergency care and not be able to communicate for themselves.

The ability to access advance care is needed to provide personalized, high-value care and the pandemic has made many people realize it’s not something they should put off anymore. This debunks the notion that advance care planning is only something for older people or those with serious health conditions. The reality is, anyone at any age and any time may need to rely on written documents to help shape their health care journey.

The accessibility of advance care is especially important for the aging population that have been under isolation during the peaks of the pandemic. And even still, many elderly people remain limited in seeing family and friends. So, when an elderly patient living in a facility needs medical care or finds themselves in a care transition in today’s climate, they’re left without anyone to help them navigate that transition and influence medical care to make sure they’re truly getting the care they want. This creates feelings of disempowerment, isolation, and disconnection with the world they feel they can no longer safely interact with. Never before has the availability of verifiable digital advance directive information been so vital in delivering care, Maria says. And we couldn’t agree more.

Advance directive forms and advance care planning documents remain largely paper based, which leads to lots of barriers, burdens, and adverse outcomes. Maria believes patients lose trust in the healthcare system when their treatment is not informed by their personal values and goals. That said, the role of technology and expanded adoption has brought to light the expectation of seamless accessibility to this type of information.

Bringing advance care information into digital data exchange is a huge task. We were curious to hear Maria’s perspective on the challenges healthcare organizations face when it comes to implementing existing and emerging health IT standards.

Maria agrees there are lots of obstacles around implementation and adoption, and believes healthcare must evolve and pivot to meet the needs of our digital world. For example, care coordination is often fragmented, which leads to poor health outcomes and increased costs. Interoperable information exchange has the potential to improve patient and provider communications, and support access to information that helps improve efficiencies, quality of care, and health outcomes. In her words, data should be usable across the spectrum of care, beyond the traditional healthcare system and out into the community.

“If we are to make advancements in care coordination across healthcare, then patients and their caregivers have to be exchange participants. They stand to benefit significantly…If we empower patients to be active participants in their care by working toward ownership of their own health data, that can help them make informed choices about their care. And all of this leads to lower cost and improved quality of care.”

Maria goes on to describe how technology solution providers’ adoption of interoperable data exchange, along with healthcare providers’ desire to access data across care settings as part of their own mission to deliver person-centered care has been the driver for innovation since the onset of Covid. However, existing workloads and processes, the natural tension between risk management and clinical practice, and a reluctance to introduce additional changes to care teams who are already stretched thin may create a perception that providers aren’t really interested in yet another technology initiative.

This is an interesting dilemma, though. Maria compares it to being so busy bailing water out of a sinking boat that there’s no time to fix the hole. And while knowing addressing the root cause of some of these issues would inevitably solve them, it does take a village (and lots of time) to stop bailing and start fixing.

To give us another tangible result of some of the gaps that exist within health data exchange, Maria says over treatment or low-value care cost the U.S. between 75 billion and 101 billion dollars in 2019. (Yes, billion with a “b”). That’s a lot of cash to spend on unnecessary or poor-quality care that could be avoided with proper interoperability.

Despite all the industry-wide collaboration to deliver cost-effective access to expertise, there are still plenty of absent or incompatible electronic medical records systems. There’s also a lack of robust data analytics capabilities, poor communication with health systems, reluctance to embrace required changes and misaligned incentives. All that said, Maria has a positive mindset as she and her team march forward and innovate to meet provider expectations, as well as the needs of those receiving care.

Throughout our conversation, there’s a common theme around person-focused care and the patient experience. Considering Maria’s work directly impacts a patient’s health care journey, we wanted to get her thoughts on how interoperability enhances the patient experience and their engagement.

Maria has observed people wanting to be more engaged with their health care. She’s seeing personal health records on the rise, which gives a person the ability to see their information. Lots of companies are creating patient portals to provide the patient with a view of their health history, which has really invited the person in to the care delivery system.

As part of their work with the HL7 project, Maria and her team set up a patient-authored care plan where the problem is described as a hypothetical situation to which the patient provides an answer. Based on those responses, it populates the goal of their care plan.

“When you can take a treatment plan or plan of care that was architected by a provider…and you can dovetail what the individual themselves has said, you have truly created a person-centric plan of care.”

Interoperable exchange of advance directive information supports more effective sharing of that information across transitions in care and enables providers to create person-centered care plans that align with a patient’s values, goals, treatment preferences and quality of life priorities. Maria’s spirited observations reflect the passion that drives her work to make an impactful difference for millions of Americans.

Before final thoughts, we wanted to hear Maria’s take on what the next push might be for nationwide interoperability. She says we’ve entered an era where organizations are grappling with tremendous growth in the amount of data available and struggling how to manage and make use of it. She believes expansion in the capabilities of providers to exchange data will drive adoption, and their needs will triangulate around two distinct areas of influence: inside the organization and outside the organization.

Inside the organization, she believes accuracy, availability and ease-of use will drive provider adoption. Information access has to be feasible for staff and easy to add into the existing workflows if heavily tasked staff are going to embrace the expansion of information when providing care and treatment.

Privacy, consent, and the staff’s understanding of what those terms mean will also be important to continue to move data exchange forward into an expected feature/function of their software capabilities. When all of those aspects of interoperable data exchange can be accommodated, then the provider’s burden of training is greatly reduced, and barriers to adoption are dramatically lowered.

Outside the organization, Maria thinks the industry needs to enable connections between provider organizations, State and Regional Information Exchanges and Qualified Health Information Networks to allow accessibility to an infrastructure of secure, consent-based data exchange. Today, it’s a difficult and inconsistent process that comes with high administrative overhead.

Maria believes the industry needs to make sure providers have efficient access to patient information that’s easy to manage. Admittedly, this change may initially be a disruption within the electronic medical record, electronic health record and clinical record vendor community.

Ideally, those vendors would deliver partial data in different ways that require a common presentation style. Data from inside the organization (for which the provider is responsible) is presented differently from data outside the organization that’s needed for continuity of care — but also protects the provider from risk and liability if outside data is inaccurate or delivered without proper consent.

“This delivery of data will protect the provider from the risk [and] liability, and allow them [to say] this came from the outside so it’s inaccurate, or it’s incomplete and this is what happened as a result of it…I think it will raise the alarms.”

Additionally, Maria goes on to say that the crossover of seamless transport mechanisms from inside and outside the organization is really important. This area of influence means technology companies have to enable the retrieval and presentation of outside information in a secure and seamless way.

She believes identity verification and authentication of the person accessing and/or creating digital information, as part of making sure the individual is who they say they are, will emerge as a new deliverable for health data access. Healthcare organizations need to have confidence that the data they access is for the person that contributed or authored that information, and identity verification is an approach that can address that. Maria believes digital identity verification is becoming the foundation of the rapidly evolving technology-based and data-driven healthcare system.

We wrap up our discussion with a few words of wisdom from Maria. She recommends that providers identify the desire and need for advance care data exchange, and access as much information as possible about the treatment they’re providing. When the market says they need to have this information, that’s when we’ll see the industry start to change. The market will drive the migration.

She encourages providers to stand up and demand access to the information they need, and for technologists to take a look at data exchange and interoperability with new eyes.

“Put yourself in the worn shoes of these healthcare heroes who have been out there caring for people through a global pandemic and lean in. Listen to what they’re asking for and innovate.”

Thank you to Maria Moen at ADVault, Inc. for sharing her experience and perspective with us!

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

This post was contributed by Alyssa Foggia-Hamm.