Piloting the use of consumer wearable devices in Idiopathic Pulmonary Fibrosis (IPF)
Idiopathic pulmonary fibrosis (IPF) is a progressive and debilitating pulmonary disease with a median survival of three to five years. PatientsLikeMe (PLM) is an online, patient-powered research network with a community over 3500 patients with IPF. PLM allows patients to share structured (conditions, symptoms, treatments) and unstructured (community forums, qualitative reports) data with other patients and researchers to accelerate research.
The objective of this pilot program was to understand the’ willingness to use wearable devices and usage patterns, specifically activity monitors and pulse oximeters, as part of disease self-monitoring within a subset of patients with IPF in the PLM community. We sought to investigate this in a small, pilot patient population to inform the feasibility and utility of a wider device deployment for patients with IPF.
The investigators recruited IPF patients to use devices as part of their health monitoring. Ethnography interviews of ten patients, four IPF experts, and two device manufacturers were conducted in order to understand the utility of different devices in this population. The results of these interviews led to the identification of two devices likely to be beneficial for IPF patients: an activity monitor and pulse oximeter.
After reviewing many devices for usability, types of information captured, and platform interoperability, the Fitbit Flex activity monitor and iHealth SpO2 pulse oximeter were selected. Members were screened for eligibility and then consented electronically to participate. The eligibility criteria were: (i) owing an iOS device, (ii) residing in USA, and (iii) self-reported diagnosis of IPF. Participants completed a survey at baseline and six-week follow-up to measure dyspnea using modified medical research council scale, perceptions of disease self-management, attitudes and experience regarding technology for disease self-management as well as evaluate the usability and likelihood of future use for each device. An engagement program was built by the PLM community moderators to facilitate direct patient communication and study implementation. Device metrics (SpO2 from iHealth, steps and distance from FitBit) were collected via the manufacturer’s application program interface (API) from participants electing to share this information with investigators.
The median age of patients (n=43) was 64 years and 54% were males. With respect to retention, 81% (n=35) responded to the follow-up survey, 77% (n=33) were able to share data from at least one device. Of these 35 respondents, 69% (n=24) and 86% (n=30) of patients reported that the activity monitor and pulse oximeter were ‘excellent’ or ‘good’ tools for monitoring IPF, respectively. A higher proportion of patients also reported they were ‘likely’ or ‘very likely’ to continuing using the pulse oximeter compared to the activity monitor (94% vs. 72%). We also noted a negative correlation between median daily step count and the severity of dyspnea (ρ=-0.58, p<0.001).
The high patient participation was achieved through a novel engagement program utilizing PLM community relationships. This pilot study established a framework for rapid deployment and real-time data collection via remote device monitoring in patients with population. Future studies should be undertaken to test this framework for large-scale deployment of tracking devices to IPF patients.