Both the clinician and the patient hold an important piece to the care puzzle. The physician has expertise in treating illness, whereas the patient is the authority on living with the condition. However, transferring the patient’s experience into a usable data set can pose challenges. Attempts at tools to facilitate strong collaboration tend to track a narrow range of symptoms and are often not able to be easily incorporated into the daily lives of patients.

These issues became apparent to Kristina Sheridan, head of the enterprise strategy and transformation department at MITRE, when her daughter Kate was diagnosed with Lyme disease. Prior to working at the non-profit, her career had a completely different focus. “Initially, I was in space engineering and astronautics,” says Kristina. “But the experience that my family went through finally gave me an understanding of what it takes and how hard it is for complex chronic patients to manage their health and for their caregivers to support them. That was why I shifted careers and joined MITRE.”

For MITRE, serving the public interest means being forward-focused while also trying to solve existing problems across the US through both technological and scientific innovation. “At MITRE, we work with government healthcare public health agencies to focus on complex problems,” explains Kristina. “We help and empower patients with chronic conditions, which is not currently focused on as much as it should be,” she continues.

Although seemingly unrelated to her work at MITRE, Kristina ’s background in space engineering and astronautics allowed her to approach the care of her daughter’s condition in a novel way. “Approaching this problem from a systems perspective, coming at it from a patient’s and a provider’s lens, allowed us to come up with a solution that would enable better informationsharing and improve outcomes,” she says.

With roughly four out of five healthcare dollars in the US being currently spent on chronic conditions, such a tool is greatly needed. The difficulty in managing these illnesses is that they demand coordination between multiple healthcare providers, which is challenging for patients, caregivers and clinicians alike. All too often, healthcare professionals are required to make decisions based on limited patient-provided data, resulting in duplication of tests, uncoordinated treatment plans, extended illness, and higher costs. “This is a national challenge,” says Kristina. “We’ve got 117 million people with one or more chronic conditions and between 34–52 million caregivers.”

Lack of support

Despite the large chronic illness population, Kristina was disappointed to find a lack of adequate resources to help manage her daughter’s care. “What we found is that there were different tools spread out across multiple different areas but there was nowhere we could go that had things in one place that were designed for us,” she explains. “A lot of tools are designed from a clinical perspective, built around one disease, one condition or trying to track only one type of information.”

Despite increasing discussion of ‘patient centricity’, this concept is rarely translated into clinical practice, which the toolkit aimed to address. “Patients are at home managing their own chronic condition the majority of the time, and they are in the clinic for a small amount of time,” says Kristina. “Life can get in the way.”

Outside the clinic, patients have their normal daily activities to maintain and accommodating care of a chronic condition into this daily routine can be highly challenging. Combined with attempting to pay attention to symptoms and then relaying this to healthcare professionals, this can become hugely overwhelming for both the patient and their caregiver. “All these things add up to this huge burden,” says Kristina.

Her experiences led to the development of the patient toolkit, an interactive resource to track a range of chronic condition symptoms, which could be easily integrated into the individual’s daily life. “We had to design it around the whole person,” says Kristina. “Our experience with Kate was that, it was not just about one diagnosis, or one set of symptoms, it was the holistic picture of what was going on that was needed so we could understand the best way to manage her care and treat her condition that allowed her to have a fuller life.”

The toolkit was designed to achieve three key aims for patients – to manage their care, collect the relevant information about their chronic condition and use that to inform decisions about their care on a daily basis. For Kate, the toolkit allowed her to experience more autonomy over her condition. “It’s an element of control,” she says. “It made it easier for me to clarify it in my own head and make plans around it. I could also develop coping skills for specific scenarios.”

117 million
Number of people with one or more chronic conditions in the US.
MITRE Corporation

The Patient Toolkit is an iPad application developed in modules to maximise the reuse of code. Its relational database is HL7-compliant to ensure future interoperability with other electronic healthcare systems and the potential for translation into other languages. Although currently only being used within the US, it was designed with the ability to be rolled out on a wider scale and eventually used by patients with chronic conditions worldwide.

The tool takes advantage of mobile technology and provides meaningful ways for patients and caregivers to visualise and understand illness data. It addresses both the financial and personal burden of chronic illness by increasing a patient’s awareness of their health status, enabling them to participate more fully with their healthcare team and improve their treatment compliance.

Central to achieving these capabilities was the collection of what Kristina calls ‘active patientgenerated data’. In contrast to information obtained by technologies like wearables and monitoring devices, which collects passive data from users, the key idea of the toolkit is that it uses data that is created by the patient.

Rather than needing to remember the often huge list of symptoms at clinic appointments, which can result in an incomplete picture being given, this information is gathered ahead of time, resulting in patients and caregivers being “more prepared and able to have a richer conversation” with healthcare providers. For example, rather than focusing on adherence in a binary way, patients can more easily identify and relay if a treatment is causing difficulties. “Sometimes I would end up missing medications for a specific reason,” says Kate.

This is beneficial for both clinicians and patients as no extra time is required for appointments because the communication is more efficient. The toolkit can also reduce healthcare costs as patients can more readily determine whether their symptoms require medical attention or not.

Obstacles to be overcome

With her scientific background, Kristina went to great lengths to ensure that the tool was evidencebased and validated by patients, caregivers and healthcare professionals. To assist in the development of the toolkit, the MITRE team collaborated with academia. This included conducting research in more rural areas. “It was very important to us that we didn’t increase disparities,” says Kristina. “We did usability testing in a hospital in Montana and the majority of patients found it easy and intuitive to use.”

Particularly popular was the journal feature, which allows for notes and photos to be taken. In chronic conditions a lot can change in a short space of time, so the ability to track symptoms in a variety of different ways ensures that nothing is missed. In addition to improving healthcare interactions, this enables patients to better understand their own health status, which can be hugely empowering.

Despite the positive feedback received about the toolkit so far, implementing it into clinical practice is an ongoing challenge. This is because it demands making a dramatic shift in the role that patients play in their care. Rather than being passive recipients, they become active members of the team. This requires acknowledgement of the value that patients offer by healthcare professionals. “It’s not an easy problem,” Kristina acknowledges.

Despite these issues, Kristina remains optimistic that decisions within the industry are moving in the right direction and that in time it will be a “common and normal tool given to patients to help them reduce the burden and better manage their own care, leading to more engagement and improved outcomes”. With more and more discussion about patient centricity and the increasing appreciation for the role of technology, this is only a matter of time. 

Features of the Patient Toolkit

My Day
The user interface was designed to be easy to use and help patients get through the administrative aspects of their days. From this one location, patients can update how they are feeling, the severity of their symptoms, special journal entries and their schedule.

My Journal
The journal feature helps patients capture unusual events or things they want to tell their doctors such as odd symptoms, what they have been eating, or details on how they are feeling. This helps them track these events over time and see how these events affect their overall health. It also helps patients remember the things they wanted to share during provider visits.

My Medications
Patients can easily add their prescription information by selecting the medication that matches their prescription label, and request reminders for taking medication. When patients are not able to take their medications the data is captured to support a conversation with their providers to develop a plan they are able to comply with.

My Symptoms
Patients can explore, input, and edit their health data, including symptom severity, on an easy-to-use mobile platform. They can identify a full set of symptoms by choosing from a pick list, then capture the severity in a few touches using a tailored list. This data is mapped to the source standards used by EHRs.

My Appointments
Patients can track their appointments, set up goals and questions pre-appointment, and enter notes in real time during or after their appointment for maximum retention. Integrating the capture of information into a patient’s day removes a significant amount of stress and enhances appointment quality.

My Reports
Once historical symptom and medication data is captured, patients can view visual reports to discover changes in their symptoms, see how they responded to medications, and track their overall state of health over time. These reports help patients decide when they need to contact a provider, and provide new patientgenerated data to help providers with clinical decision-making.

Source: MITRE Corporation