What if we had a comprehensive set of patient-centered measures to guide how we plan care in collaboration with patient needs. In healthcare, patient clinical benchmarks collection occurs at the time of the visit, and additional surveys are administered to different segments of the population. The value that digital tools bring is real-time data collection and broadening the lens on measures that matter most to patients.
A new paper by Christine Manta and colleagues from the Digital Medicine Society published in Digital Biomarkers offers us a framework for measuring what matters to patients. We may be data-rich, but we run the risk of being insight poor. If we only look through the clinical lens, we may miss the value sensor, or app derived brings to the clinical picture to give a more holistic view on health and function.
There is also a risk of having a kitchen sink approach by vacuuming up all data and not providing patient options for their data use so they can choose what to share or not. While this strategy has been widely used across the internet, the advent of digital health allows us to step back and ask what data we need to collect to benefit care and improve outcomes.
The framework outlined above allows us to think through what is meaningful healthwise, what dimensions to consider like symptom management, and how that may change over time. The framework also considers outcomes, what matters to the patient, and what is of interest to the care team members, where might they overlap or differ? Lastly, defining endpoints for data collection are included. Research studies will have protocols to follow to determine this, but healthcare may have different needs. Is patient improvement a marker for stopping data collection? Being clear on endpoints will be an essential evolution in a realm that is data-rich. The value of this framework is every dimension is also tapping into patient needs. Determining what data matters as they go about their busy lives trying to manage their health, sensor data can be used to diagnose, monitor, treat, and manage acute or chronic conditions.
Ensuring the member’s voice is in the DNA of app and sensor development is a critical digital health opportunity. It is also a cornerstone of human-centered design. When do you get the member voice on your development journey? Are you talking to your audience regularly and obtaining their feedback so you can build and prototype with their needs in mind? This framework offers an excellent rubric to work within.
Thanks for reading – Trina
(Opinions are my own)
Manta C, Patrick-Lake B, Goldsack J, C: Digital Measures That Matter to Patients: A Framework to Guide the Selection and Development of Digital Measures of Health. Digit Biomark 2020;4:69-77. doi: 10.1159/000509725