According to the Office of the National Coordinator (ONC), Patient Generated Health Data (PGHD) “are health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern.” It is even part of the ONC strategic plan.
While some providers fear the volume of data generated by patients outside of office visits, others are demonstrating how it can be integrated into clinical workflow through tools like Apple HealthKit and integration companies like Validic.
But on a personal level, is there benefit for the patient in generating data? Kristina Sheridan experienced this reality when her daughter experienced complications from Lyme Disease. As her daughter deteriorated and went to multiple specialists, Kristina began tracking symptoms and other data on a daily basis, resorting to spreadsheets and also calculating a disease burden score based on her daughter’s suffering. Out of this data she created a profile which she presented to a specialist; this profile from PGHD enabled discovery of a root cause of her problems and a treatment plan. Now Kristina is developing a tablet-based app for Mitre to help others to collect their PGHD more easily.
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How can PGHD become a routine part of care? There are three broad categories that need to be considered.
- First, medical-grade devices like Continuous Glucose Monitors. (CGMs), wireless blood pressure monitors, etc. should be designed in a way that can seamlessly share data with providers.
- Second, PGHD can be generated by consumer-grade devices. The most common type is activity monitors such as the FitBit.
- Third, data entered by the patient through the patient portal. This could include something as simple as weight or blood pressure or more detailed Patient Reported Outcomes or quality of life measures.
Rather than fearing the volume and validity of a potential flood of data, providers can take practical steps to integrate the data into their workflow. For instance,
- Start with patients with chronic conditions who may be part of a population health program. For instance, have patients with congestive heart failure (CHF) submit data on the weight and blood pressure either through a form on the patient portal or via wireless devices in the home (passive monitoring). Assign a team member to view the results. Later consider a dashboard view that can alter the team when there are warning signs of deterioration, risk of emergency room visits. Duke Medicine is working on this approach using Apple Healthkit. They reported their results at the mHealth Summit, which is a part of the Connected Health Conference.
- Select a group of patients to use consumer wearable fitness trackers, for instance, Parkinson’s or Multiple Sclerosis. Gather a baseline of data, provide training in behavior change to increase activity, measure the change and see if the approach requires modification.
- For patients with depression or other mood disorders, provide a standardize questionnaire evaluating mood on the patient portal and ask a group of patients to report at least 3 times per week. Or select a mobile app that can provide the same service and send the data to your EHR.
Evaluate the results after 2 months. See if there are implications for changing your treatment approach.
In each case, evaluating the effectiveness and value of the data is essential. An iterative approach to finding value will offer some of the best results. With refinement, more stories like Kristina’s will lead to better diagnostic and treatment accuracy and make patients and families part of the team.
