“We are very individual”: Anticipated effects on stroke survivors of using their person-generated health data (Preprint)
Authors: Dimaguila Gerardo Luis , Batchelor Frances , Merolli Mark , Gray Kathleen 
Published: November 2019

BACKGROUND

Person-generated health data (PGHD) are produced by people when they use health information technologies. People who use PGHD may have changes in their engagement with their own health care, their relationship with their healthcare providers, and their sense of social support and connectedness. Research into evaluating those reported effects however, has not kept up; thus a method for developing patient-reported outcome measures (PROMs) of utilising PGHD, called the PROM-PGHD Development Method, was previously designed and applied to the exemplar case of Kinect-based stroke rehabilitation systems (K-SRS). A key step of the method ensures that the patient’s voice is included. Allowing stroke survivors to participate in the development and evaluation of health services and treatment can inform health care providers on decisions about stroke care, and thereby improve health outcomes. Moreover, eliciting the input of stroke survivors is important because there could be differences in their perspectives and that of their care providers, regarding treatment and management.

OBJECTIVE

This paper presents the perspectives of stroke survivors and clinicians on the anticipated effects of stroke survivors’ use of PGHD from a poststroke simulated rehabilitation technology.

METHODS

This study gathered the perspectives of six stroke survivors and five clinicians through three focus groups and three interviews, recruited for convenience. In the stroke survivors’ focus groups, participants were asked to give their perspectives on how using the PGHD from Jintronix may affect their outcomes; while in the clinicians’ focus group, clinicians were asked for their perspectives on how PGHD use may affect the outcomes of stroke survivors. Participants were also asked questions intended to encourage them to comment on the initial items of the PROM-PGHD. Deductive thematic analysis was performed.

RESULTS

Survivors and clinicians had varying perspectives in three of the six themes presented, and puts emphasis on the importance of allowing stroke survivors to participate in the evaluation of digital health services. However, the potential for tensions to occur between the needs and preferences of patients and their care providers could be reduced through a similar understanding of health treatment goals. This paper has further demonstrated that outcomes of utilising PGHD can be measured. For instance, stroke survivors described that using PGHD could result in positive, negative, and nil effects on their health behaviours.

CONCLUSIONS

This study is the first to gather and compare the perspectives of stroke survivors and clinicians, in order to develop a PROM-PGHD for a simulated rehabilitation system. The reported PGHD utilisation outcomes would directly inform the development of a PROM-PGHD for K-SRS, of which this paper is a key step. Additionally, they could help inform health care providers on decisions about stroke care. This is particularly relevant in the area of poststroke simulated rehabilitation technologies.