JMIR Publications

ABSTRACT

Background:

Online health communities (OHC) are widely used in the UK, they can be helpful with self-management of chronic diseases but it is unknown whether use improves health outcomes.

Objective:

The aims of this study were: 1) to determine change in activation over three months in new users of an OHC, 2) to describe patterns of engagement with an OHC, 3) to examine whether patient characteristics at baseline were associated with subsequent patterns of engagement, and 4) to determine if patterns of engagement during the three months were associated with changes in patient activation, healthcare utilisation and health status.

Methods:

Active new OHC users on HealthUnlocked (HU) were surveyed to measure demographics, levels of “patient activation” (describing a person’s confidence in managing their own health), healthcare utilisation and health status using a web-based survey at baseline and three months. Alongside, for a sample of HU users and survey responders, daily OHC website usage data was automatically captured indicating whether or not a user interacted with HU. This was used to identify clusters of engagement with HU. For survey responders, baseline characteristics, patient activation, healthcare utilisation and health status was compared at baseline and three months, overall and between engagement clusters using t-tests and chi-squared tests.

Results:

The survey was sent to 9469 people; 990 people completed the baseline survey, of whom 329 completed the follow-up survey. Baseline activation was most frequently level 3, described as “taking action but still lacking confidence”. At follow-up a change of 2.6 points was seen, with the greatest change seen in those at lowest baseline activation levels. Four clusters of engagement were identified - low, medium, high and very high - who were active on HU for a mean of 4, 12, 29 and 59 days, respectively. Survey responders were more commonly high or very high engagers. High and very high engagers were predominantly female, had less comorbidity and were more recently diagnosed compared to low or medium engagers. Overall activation increased over time in all engagement groups. Baseline activation was highest in low and very high engagers. Very high engagers had the greatest improvement in activation (5 points), although the average change was not above what is considered clinically meaningful for any group. Accident and emergency visits at follow-up were lower with higher engagement, though this trend was not seen for other healthcare utilisation measures.

Conclusions:

This observational study has limitations, including the lack of a control group, selection factors, and a short follow-up. Nonetheless, it’s a useful step towards investigating how OHCs may affect health behaviour and outcomes.